Question:

hallo martin, Hi there, It’s a disgrace that they gave you the non-brand mesalasine! They gave me that once and I got worse immediately. Only later I found out that the non-brand is not the same as salofalk, as the farmasist wanted me to believe. Like I posted earlier, the trick is in the packaging.

Yes I know. But it’s like you say, the pharmacists try to make you believe otherwise. fortunaltely i have a very good doctor. That regulates when the mesalasine is released in the intestine. And that’s what makes it different from Asakol for example, which is also mesalazine. I have asked my doctor about all my medicines if I can accept an alternative. Salofalk is the only one he said should really be salofalk. Maybe you should become a member of the Dutch Crohn Association? They also warned against substitute medicines.

I know, and I am a member. I showed the "yellow card", but the pharmacist assured me that there is no difference. I now know otherwise, and so does the pharmacist … By the way, I’m in The Hague and go to the LUMC in Leiden.

Ah, I’m in Tilburg, go to St. Elisabeth ziekenhuis (that probably does sound a whole lot less impressive  ;-)   ). Groetjes, patricia – Hide quoted text — Show quoted text – — Martin The Netherlands

Response:

Hi Patricia, As I first stated, my GI prescribed this for me and I just wanted a little feedback on it That is my only motivation.

Ah, I see. Sometimes people ask something, and there’s a whole story behind it, and it’s easier to answer if you just know in advance …. So even though you wrote that your doctor started prescribing, I could still think of a lot of things, like are you being sceptical, or maybe new to crohn’s, do you want technical info or rather people’s experience,  etc. etc. greetings, patricia

Response:

I was just diagnosed with Crohn’s, so yes, I guess that would mean I am new to crohn’s. — "I never met a chocolate I didn’t like!" -Lisa- – Hide quoted text — Show quoted text – Hi Patricia, As I first stated, my GI prescribed this for me and I just wanted a little feedback on it That is my only motivation. Ah, I see. Sometimes people ask something, and there’s a whole story behind it, and it’s easier to answer if you just know in advance …. So even though you wrote that your doctor started prescribing, I could still think of a lot of things, like are you being sceptical, or maybe new to crohn’s, do you want technical info or rather people’s experience,  etc. etc. greetings, patricia

Response:

I thought Salofalk was the original 5ASA medication using sulfur as the binding agent.  I am not sure of this, but you can easily look up this medication at a number of the pharmacy web sites on line such as www.rx.com.  If you live in the U.S. and you have an HMO you can most likely call your HMO nurse or pharmacy number to ask questions.  If so, it may be the sulfur component causing the problems and a switch to a 5ASA w/o the sulfur, such as Pentasa, Asacol, etc. might be what you need.  If you are having problems, CALL YOUR PRESCRIBING DOCTOR IMMEDIATELY.    mgbio – Hide quoted text — Show quoted text – It is causing me more painful cramping as well. What are you on now Paula?

Response:

The pred will NOT help your fissure close, it will do the opposite, inhibit its healing.  mgbio – Hide quoted text — Show quoted text – Hi, I had mild, temporary increased cramping. My bleeding and anal fissures improved somewhat, but I still needed to increase Pred. I was only on this for 10 days as it was not significant enough in recovery. Hope that helps? NinaW Does anyone have any info or feedback on this drug as my GI prescribed them for me 1 week ago? ANY info would be greatly appreciated

Response:

Martin, I am glad to hear that you are doing so much better!  I hope this continues!!!  mgbio – Hide quoted text — Show quoted text – Actually, I’m doing pretty good lately! After a very bad year (had to go on 50 mg pred), I decided to make some changes. The prednidon made me gain a lot of weight, which also was the only thing it did for me this time. Even on 50 mg I didn’t feel any better. Strangly enough, when I started to ween down (cause 50 mg is not healthy), I started to improve. In april I was back on 10 mg (which has proven to be my lowest possible dose), and I was feeling better. And that’s when I decided to change my diet: I eat three times a day and that’s it. No more extra’s or in-betweens. But most importantly,  I think: I stay away from sugar. Not all sugar, but I think I’ve cancelled out about 80% of what I used to eat (in tea, jam, candy, chocolate, drinks etc etc). My theory is that the bad bacteria live on sugar, so my stomach is much calmer now . I must say, life has gotten a bit dull now when it comes to eating and drinking. I stick to green tea, water, soy milk and fruit juice (red fruits, no added sugar). No candy, chips, cake etc. Not that I used to eat those things a lot, but now I just don’t. At the same time I try to excersise more, although that’s something I have to be very careful about. I take more (and longer) walks, I go to work by bike (and when the weather is bad, I use a hometrainer instead). As a result, I now feel better and I lost 22 kilograms. In 5 months. I made quite an impression when I got back to work after my vacation. I’m actually skinny now, weighing 76 kg instead of the 98 of last december On the downside, I have to replace my whole wardrobe… So… that’s how I’m doing. But I’ll believe in it myself if I still feel better in december. Cause autumn and winter are always my bad months. Oh, and I’m never away from this group. I just don’t post much

Response:

Salofalk was the first med I got. Had a few after that. The only one truly helping me was entocort ( budesonide) but doc took me off it for some reason. He then rx prednisone and imuran together ( what was his thinking here???). First pred made me almost lose my eyesight and if I had not stopped the imuran I believe I now would have been a liver patient. Enough for me to get my own help. I now have 1 lomotil a day for "D" and I use a zapper which I am very happy about. Also use a strict diet though but at least I have basically no more pain. If it causes you more cramping please get back to your doc. You and I are not the only ones. There is other medication around and one of them might be helping you instead of making you worse. It seems for my body most are very bad. Just lucky I guess Hope something will help you very soon. – Hide quoted text — Show quoted text – It is causing me more painful cramping as well. What are you on now Paula? — "I never met a chocolate I didn’t like!" -Lisa- Just my experience: 1: very expensive 2: caused more and more severe cramps 3: caused bleeding where non was before. Never again for me. YMMV Does anyone have any info or feedback on this drug as my GI prescribed them for me 1 week ago? ANY info would be greatly appreciated — "I never met a chocolate I didn’t like!" -Lisa-

Response:

Hi Patricia, As I first stated, my GI prescribed this for me and I just wanted a little feedback on it That is my only motivation. — "I never met a chocolate I didn’t like!" -Lisa- – Hide quoted text — Show quoted text – Does anyone have any info or feedback on this drug as my GI prescribed them for me 1 week ago? ANY info would be greatly appreciated I have been diagnosed crohn in july 2002 followed by immediate hospitalization, having suffered an ever-increasing flare for about 12 months. I was prescribed Salofalk from then on, for maintenance purposes (in the hospital I also got dexa). I received MP mesalazine though, the non-brand alternative in the netherlands. A year later a sudden new severe flare got me back into the hospital. The dosage of salofalk prescription was increased from then on. Several symptoms kept being present, i never reachedfull remission. Since two months now, my physician, who has found out that a lot of patients don’t get what they are prescribed, insisted on salofalk being given. This has drastically reduced those symptoms, and I have the feeling that the disease is much more under control now. So for me, salofalk really helps keeping crohn down. I use 3 times 1 gram a day. Side effects for me include some psychological symptoms, but not too severe. Hope the information is of help. Greetings, Patricia ps. i hope that you will let us know the motivation as to why you want all this information.

Response:

Does anyone have any info or feedback on this drug as my GI prescribed them for me 1 week ago? ANY info would be greatly appreciated

I have been diagnosed crohn in july 2002 followed by immediate hospitalization, having suffered an ever-increasing flare for about 12 months. I was prescribed Salofalk from then on, for maintenance purposes (in the hospital I also got dexa). I received MP mesalazine though, the non-brand alternative in the netherlands. A year later a sudden new severe flare got me back into the hospital. The dosage of salofalk prescription was increased from then on. Several symptoms kept being present, i never reachedfull remission. Since two months now, my physician, who has found out that a lot of patients don’t get what they are prescribed, insisted on salofalk being given. This has drastically reduced those symptoms, and I have the feeling that the disease is much more under control now. So for me, salofalk really helps keeping crohn down. I use 3 times 1 gram a day. Side effects for me include some psychological symptoms, but not too severe. Hope the information is of help. Greetings, Patricia ps. i hope that you will let us know the motivation as to why you want all this information.

Response:

Hi there, It’s a disgrace that they gave you the non-brand mesalasine! They gave me that once and I got worse immediately. Only later I found out that the non-brand is not the same as salofalk, as the farmasist wanted me to believe. Like I posted earlier, the trick is in the packaging. That regulates when the mesalasine is released in the intestine. And that’s what makes it different from Asakol for example, which is also mesalazine. I have asked my doctor about all my medicines if I can accept an alternative. Salofalk is the only one he said should really be salofalk. Maybe you should become a member of the Dutch Crohn Association? They also warned against substitute medicines. By the way, I’m in The Hague and go to the LUMC in Leiden. — Martin The Netherlands – Hide quoted text — Show quoted text – Does anyone have any info or feedback on this drug as my GI prescribed them for me 1 week ago? ANY info would be greatly appreciated I have been diagnosed crohn in july 2002 followed by immediate hospitalization, having suffered an ever-increasing flare for about 12 months. I was prescribed Salofalk from then on, for maintenance purposes (in the hospital I also got dexa). I received MP mesalazine though, the non-brand alternative in the netherlands. A year later a sudden new severe flare got me back into the hospital. The dosage of salofalk prescription was increased from then on. Several symptoms kept being present, i never reachedfull remission. Since two months now, my physician, who has found out that a lot of patients don’t get what they are prescribed, insisted on salofalk being given. This has drastically reduced those symptoms, and I have the feeling that the disease is much more under control now. So for me, salofalk really helps keeping crohn down. I use 3 times 1 gram a day. Side effects for me include some psychological symptoms, but not too severe. Hope the information is of help. Greetings, Patricia ps. i hope that you will let us know the motivation as to why you want all this information.

Response:

I think that

Question:

I also had pills showing up undissolved in the ostomy bags.  Therefore, I frequently reminded nurses and doctors about a pills ability to dissolve in the stomach vs. intestine when I had ostomies.  Frequently, adjustments were made. — Paul Pinyot

– Hide quoted text — Show quoted text – Mg you’re right! The ultimate use for a drug is one thing but seeing pills in your stool or ostomy bag is the issue. when my son was on mesalamine prior to his ostomy he was passing pills in his stool. The MD simply increased his dose. Oxycontin was passing into his ostomy bag…I read somewhere on a UK pharmaceutical website that enteric coated drugs shouldn’t be used in pt.s with ostomies in the UK. HOWEVER!  They are used here, If the doc prescribes one and it works, that’s all that matters! IBD appears to be about as predictable as a tornado and I’m sure treating it is like grabbing a wildcat by it’s tail. — For Duty and Humanity!

Response:

LOL, good analogy!  I hope you find an answer for controlling your son’s pain.  mgbio – Hide quoted text — Show quoted text – Mg you’re right! The ultimate use for a drug is one thing but seeing pills in your stool or ostomy bag is the issue. when my son was on mesalamine prior to his ostomy he was passing pills in his stool. The MD simply increased his dose. Oxycontin was passing into his ostomy bag…I read somewhere on a UK pharmaceutical website that enteric coated drugs shouldn’t be used in pt.s with ostomies in the UK. HOWEVER!  They are used here, If the doc prescribes one and it works, that’s all that matters! IBD appears to be about as predictable as a tornado and I’m sure treating it is like grabbing a wildcat by it’s tail.

Response:

Mg you’re right! The ultimate use for a drug is one thing but seeing pills in your stool or ostomy bag is the issue. when my son was on mesalamine prior to his ostomy he was passing pills in his stool. The MD simply increased his dose. Oxycontin was passing into his ostomy bag…I read somewhere on a UK pharmaceutical website that enteric coated drugs shouldn’t be used in pt.s with ostomies in the UK. HOWEVER!  They are used here, If the doc prescribes one and it works, that’s all that matters! IBD appears to be about as predictable as a tornado and I’m sure treating it is like grabbing a wildcat by it’s tail. — For Duty and Humanity!

Response:

Question:

I feel 90% better taking quality multi-enzymes. They can be bought In a health food store. Of course what works for 1 might not another. Stan

Response:

To "New To Group"  Sorry to hear of your daughters extended problems. May I ask if she was ever on antibiotics for extended periods or often on antibiotics for short periods, say for middle ear infections? I ask this because there is a new report out that taking antibiotics raises the possibility of breast cancer. If true, why not other problems also! Group opinions please.

Response:

I think they’re looking through the wrong end of the glasses . Meaning that people who need more antibiotics probably don’t have a good immune system making them more likely to get cancer and not that the antibiotics cause it. Just my opinion. —  Alf Nilsen

Response:

- Hide quoted text — Show quoted text – Hi all, I’m not a big poster on message boards, but things have come to such a head that I feel I need to either reach out or explode.  I choose to reach out, as this does not concern me physically, but rather my daughter.  It goes without saying that I’ll do anything for her.   Brief synopsis:  20 yo female, UC for 2.5 years, not very well controlled regardless of what regimen she was on.  Pentasa, Asacol, Prednisone then Remicade, followed by Immuran and cyclosporine.  She ended up with PCP pneumonia following the immunosuppressants and after all was said and done has ended up with a colectomy, then an ileo-anal anastamosis with a loop ileostomy.  Lots more stuff involved in between all this, but you get the general idea.   My main question is do any of you experience overall body aches and pains?  She says she feels like it’s the flu, only the pain is worse.  The worst pain is under and around her stoma, and down in the pouch that has been created.  But there is also generalized pain and joint pain.  She was diagnosed with a very small fistula about 5 weeks ago and I know that can account for some of the pain. But this is real, true pain and the surgeon seems either not to care or is baffled by it.  Her pain management is non-existent. After her colectomy surgery she had an end ileostomy with no pain, complications, etc.  After her ‘pouch’ surgery resulting with the loop ileostomy, there have been nothing but problems, pain, etc.  Multiple ER trips and hospitalizations.  I think her total hospital time was over 25 weeks last year.  We are still waiting for her take down surgery (the surgeon just keeps dangling that carrot) and have been told by a couple different surgeons that a lot of these problems will go away once this surgery is done.   We just got home from the hospital last night and the pain is back.   Any words of wisdom?  Anything would be appreciated, I am at the end of my rope trying to do the right thing for her.  Please help a mom get some pain relief for her child.  (I know she’s 20, but she’s still my baby!) Thanks for listening. Becky

hi becky welcome to the group..you are in a good place.. first let me say that as a parent of adult children i totally appreciate how you are feeling about your daughter… i have never had surgery..but..OH YES to the flu like symptoms..the aches..the joint pains..etc…thats a BIG part of crohns and uc…there are some decent prescription meds that help with those..i take relafen(nambumetol)…its sort of like aleve and those..but safer on the gut…that and tylenol help a lot… i hope you get the help you seek on this board..and your daughter and you are in my prayers.. annie

Response:

With the pain management see if the dr that you trust and who is helping you the most that you said you are keeping in the loop, good decision too all mine have to keep in touch with each other, can refer you to a pain specialist for your daughter so that the paranoia of other dr visits for other things don’t become so complicated.  All my dr’s (primary, gi, surgeon and pain plus anyone else if I get in trouble) know about the others.  This would be a way to help with the pain and allow the pain dr to know no one else is prescribing also to her.  UM MOM Susan

– Hide quoted text — Show quoted text – Hi Jeff, mgbio, UM MOM Susan, and Vanny, (plus everybody else!) Thank you so much for your responses, they gave me hope and several ideas. I apologize for the delay in my response, AO*ell <G wasn’t letting me open any newsgroups last night. Couple of new developments, we have decided to change surgeons as my daughter has lost faith/confidence in the current one.  We have been trying so hard to keep our primary care physician in the loop, and he has been helping with the pain control issue until the next pouchogram, which should be around 2/25. (she HAS been to the pain "specialist" who did absolutely nothing for her) We were accused of ‘going behind her back’ when we went to our regular physician for a cold.  He is a godsend and the only voice of reason in this whole mess and he can’t seem to relate to her (the surgeon) either. Surgeon has a way of manipulating the very words you say to make it sound like something completely different.  In other words, she makes us look like liars and not only does it hurt but its untrue.  I am still shocked by this, but the only thing I can figure is that my daughter’s case is complicated, her 2nd surgery dehissed and the surgeon takes it as a personal affront that my girl isn’t responding like a text book case. Fortunately, our PC physician intervened for us and we will be able to see one of the surgeons we saw as a consult.  He is the top colo-rectal surgeon in our area and we both really liked what he had to say when we saw him.  Plus, he is out of a different hospital and that will help tremendously as the nurses were really awful with this last hospital stay.  Ignoring her pain, not getting a PICC line put in (her veins are shot from all the pred), lying about certain things and I overheard them talking about us.  Great nurses, huh? AARRRGHGH Oh, how I could go on & on & on ooops, rant over. <G The other development is that we went to see a nauturopath.  He placed my daughter on antioxidants, enzymes and other natural things to detoxify her liver & kidneys.  So we’ll see how that goes.  It’s all vitamin/natural based so it couldn’t hurt. Anyway, I wanted to thank you for your suggestions, kindness, etc.  It was so nice to hear a friendly voice in a crummy situation.  It is still a long haul. My good vibes, thoughts, etc. go out to you all who are suffering through this. Becky hi becky, my heart goes out to your daughter.  i have 2 of them about that age.  it has to be trying.  i have cd not uc, but i know what complications can be and what extended hospital time is.  my worst was 3 1/2 weeks with the worst pain anyone can imagine (pyoderma gangrenosum and put on drip and demand morphine). i don’t have any operations either, hopefully others can help you there from the group, i am certain some can. my words of wisdom is this.  you sound tenacious, you have to stay that way. don’t get discouraged.  i was misdiagnosed for a very long time and put on treatments that further damaged things.  so you have to continue to go to the right docs until you get one that knows his/her stuff and takes action, knowledgeable action.  so this is more wisdom of, keep doing what you are doing and go after it.  don’t stop.  you might want to consider a more noteworthy, possibly a teaching/research medical center if you haven’t already.  i have found out not all docs are the same.  the knowledge base if vast.  some specialize in what you are dealing with.  pain management. lack of, is uncalled for in my opinion.  get to a pain management center/clinic/doc.  i am sure you heard this before, so i hate to make this sound trivial, there is pain, there is a reason, it just has not been discovered yet. good luck and let me know how things are going. jeff

Response:

i just wanted to say your experience with docs is all too common.  until you go thru something like this, you just can’t appreciate how true this statement is.  you know… jeff

– Hide quoted text — Show quoted text – Hi Jeff, mgbio, UM MOM Susan, and Vanny, (plus everybody else!) Thank you so much for your responses, they gave me hope and several ideas. I apologize for the delay in my response, AO*ell <G wasn’t letting me open any newsgroups last night. Couple of new developments, we have decided to change surgeons as my daughter has lost faith/confidence in the current one.  We have been trying so hard to keep our primary care physician in the loop, and he has been helping with the pain control issue until the next pouchogram, which should be around 2/25. (she HAS been to the pain "specialist" who did absolutely nothing for her) We were accused of ‘going behind her back’ when we went to our regular physician for a cold.  He is a godsend and the only voice of reason in this whole mess and he can’t seem to relate to her (the surgeon) either. Surgeon has a way of manipulating the very words you say to make it sound like something completely different.  In other words, she makes us look like liars and not only does it hurt but its untrue.  I am still shocked by this, but the only thing I can figure is that my daughter’s case is complicated, her 2nd surgery dehissed and the surgeon takes it as a personal affront that my girl isn’t responding like a text book case. Fortunately, our PC physician intervened for us and we will be able to see one of the surgeons we saw as a consult.  He is the top colo-rectal surgeon in our area and we both really liked what he had to say when we saw him.  Plus, he is out of a different hospital and that will help tremendously as the nurses were really awful with this last hospital stay.  Ignoring her pain, not getting a PICC line put in (her veins are shot from all the pred), lying about certain things and I overheard them talking about us.  Great nurses, huh? AARRRGHGH Oh, how I could go on & on & on ooops, rant over. <G The other development is that we went to see a nauturopath.  He placed my daughter on antioxidants, enzymes and other natural things to detoxify her liver & kidneys.  So we’ll see how that goes.  It’s all vitamin/natural based so it couldn’t hurt. Anyway, I wanted to thank you for your suggestions, kindness, etc.  It was so nice to hear a friendly voice in a crummy situation.  It is still a long haul. My good vibes, thoughts, etc. go out to you all who are suffering through this. Becky hi becky, my heart goes out to your daughter.  i have 2 of them about that age.  it has to be trying.  i have cd not uc, but i know what complications can be and what extended hospital time is.  my worst was 3 1/2 weeks with the worst pain anyone can imagine (pyoderma gangrenosum and put on drip and demand morphine). i don’t have any operations either, hopefully others can help you there from the group, i am certain some can. my words of wisdom is this.  you sound tenacious, you have to stay that way. don’t get discouraged.  i was misdiagnosed for a very long time and put on treatments that further damaged things.  so you have to continue to go to the right docs until you get one that knows his/her stuff and takes action, knowledgeable action.  so this is more wisdom of, keep doing what you are doing and go after it.  don’t stop.  you might want to consider a more noteworthy, possibly a teaching/research medical center if you haven’t already.  i have found out not all docs are the same.  the knowledge base if vast.  some specialize in what you are dealing with.  pain management. lack of, is uncalled for in my opinion.  get to a pain management center/clinic/doc.  i am sure you heard this before, so i hate to make this sound trivial, there is pain, there is a reason, it just has not been discovered yet. good luck and let me know how things are going. jeff

Response:

Fortunately, our PC physician intervened for us and we will be able to see one of the surgeons we saw as a consult.  He is the top colo-rectal surgeon in our area and we both really liked what he had to say when we saw him.  Plus, he is out of a different hospital and that will help tremendously as the nurses were really awful with this last hospital stay.

Man, that is a rough go, Becky.  I am so glad you have at least one good doctor and a new surgeon.  Sometimes it takes a lot of persistence to find a decent doctor.  I’ve been through the system myself as a patient, as a caregiver for my mom with her various hospitalizations as she ages, and now for my SO with CD, who will have surgery on Monday.  I can relate to every miserable word you say about your awful experiences, and I know that sometimes it is like shoveling slag to try to find a doctor who is minimally helpful. We finally hit a run of luck, and my SO has a PC doctor, a GI, and a surgeon that we like and trust.  It makes all the difference in the world to our attitudes and ability to cope. You are wonderful to keep slugging it out to find decent care for your daughter.  I hope that good pain management and good health are on their way to you both. ep

Response:

Hi Jeff, mgbio, UM MOM Susan, and Vanny, (plus everybody else!) Thank you so much for your responses, they gave me hope and several ideas.  I apologize for the delay in my response, AO*ell <G wasn’t letting me open any newsgroups last night.   Couple of new developments, we have decided to change surgeons as my daughter has lost faith/confidence in the current one.  We have been trying so hard to keep our primary care physician in the loop, and he has been helping with the pain control issue until the next pouchogram, which should be around 2/25. (she HAS been to the pain "specialist" who did absolutely nothing for her)  We were accused of ‘going behind her back’ when we went to our regular physician for a cold.  He is a godsend and the only voice of reason in this whole mess and he can’t seem to relate to her (the surgeon) either. Surgeon has a way of manipulating the very words you say to make it sound like something completely different.  In other words, she makes us look like liars and not only does it hurt but its untrue.  I am still shocked by this, but the only thing I can figure is that my daughter’s case is complicated, her 2nd surgery dehissed and the surgeon takes it as a personal affront that my girl isn’t responding like a text book case.   Fortunately, our PC physician intervened for us and we will be able to see one of the surgeons we saw as a consult.  He is the top colo-rectal surgeon in our area and we both really liked what he had to say when we saw him.  Plus, he is out of a different hospital and that will help tremendously as the nurses were really awful with this last hospital stay.  Ignoring her pain, not getting a PICC line put in (her veins are shot from all the pred), lying about certain things and I overheard them talking about us.  Great nurses, huh?  AARRRGHGH Oh, how I could go on & on & on ooops, rant over. <G The other development is that we went to see a nauturopath.  He placed my daughter on antioxidants, enzymes and other natural things to detoxify her liver & kidneys.  So we’ll see how that goes.  It’s all vitamin/natural based so it couldn’t hurt. Anyway, I wanted to thank you for your suggestions, kindness, etc.  It was so nice to hear a friendly voice in a crummy situation.  It is still a long haul. My good vibes, thoughts, etc. go out to you all who are suffering through this. Becky – Hide quoted text — Show quoted text – hi becky, my heart goes out to your daughter.  i have 2 of them about that age.  it has to be trying.  i have cd not uc, but i know what complications can be and what extended hospital time is.  my worst was 3 1/2 weeks with the worst pain anyone can imagine (pyoderma gangrenosum and put on drip and demand morphine). i don’t have any operations either, hopefully others can help you there from the group, i am certain some can. my words of wisdom is this.  you sound tenacious, you have to stay that way. don’t get discouraged.  i was misdiagnosed for a very long time and put on treatments that further damaged things.  so you have to continue to go to the right docs until you get one that knows his/her stuff and takes action, knowledgeable action.  so this is more wisdom of, keep doing what you are doing and go after it.  don’t stop.  you might want to consider a more noteworthy, possibly a teaching/research medical center if you haven’t already.  i have found out not all docs are the same.  the knowledge base if vast.  some specialize in what you are dealing with.  pain management.  lack of, is uncalled for in my opinion.  get to a pain management center/clinic/doc.  i am sure you heard this before, so i hate to make this sound trivial, there is pain, there is a reason, it just has not been discovered yet. good luck and let me know how things are going. jeff

Response:

Hi Becky, I have Crohns, which has been confined to the colon to date and resulted in my having an ileostomy 11 years ago. Your daughter’s plight sounds like mine some 14 months ago. I had pains, which were largely tummy and LHS back, but then I had radiating pains into my left leg plus arthralgia in my knees and general malaise and total exhaustion. I thought that I had triple chronic fatigue syndrome plus cancer of the spleen, pancreas, stomach and you name it. After seeing 4 gastroenterologists I was diagnosed with ‘psychovegetative exhaustion’, a large gallstone and possible adhesions www.adhesions.org. I went to a stoma nurse who diagnosed me as having a complete stoma stenosis. Your daughter will know if this is happening because the output will be machine gun style instead of a sedate globbing (if you get my drift). When they operated on me they additionally found that the last 3 inches or so of illeum was concertina’d in itself. Apparently, this sometimes happens. I understood this to mean that it is mechanical damage that occurs to the ileostoma due to the peristaltic action of the gut and the inability of the small intestine to move without encountering high resistance (sewn in and not attached to the colon). The ileostomy resurgery in January was a success in as far as after 8 days I notched up healthwise, but was still way under par with my ‘psychovegetative exhaustion’ and my gut pains. I found out three weeks later that I had been diagnosed with acute gastritis and reflux oesophagitis (GERD) the day before I was operated on and they forget to tell me or my doctor and forgot to treat me for it. Anyway in a nutshell I am a lot better than I was, just fighting tiredness (Crohn’s, GERD and heart failure) and pains, which appear to be partly mechanical due to adhesions and partly due to the GERD. I was diagnosed with heart failure (damaged LHS valve due to inflammation) in November 2003, which I attribute to inflammation due to Crohn’s inflammation, which went undiagnosed for well over 10 years. Back to your daughter. Firstly, it is great that you believe her and are not telling her that it is pyschvegetative. This is an unqualified opinion that you are receiving here, but she might have pouchitis www.j-pouch.org or might have an infection left over from her last operation or as a result of the operation (digested food travelling over wound tissue). I was not feeling as good as I am now last month and am convinced it was because I had an infection – viral, bacterial, fungal – who knows? An infection and perhaps also pouchitis, in my humble opinion, might be the likely culprits because the infection would produce the fluey tiredness, joint aches. If it is a virus or fungal infection then no antibiotic will help and the docs are unlikely to give her antibiotics if they are not convinced that it is bacterial. She might have adhesions www.adhesions.org, but everybody that has surgery gets adhesions and the majority of the time they do not cause any pain. Inflammation, trauma and old age also causes adhesions. So she would have to be very unlucky to have painful adhesions from a first operation that is not a gynae op. where painful adhesions are more prevalent. I have been operated on 6 times and it was after the gynae op. in  July 2002  that I started to get the ‘adhesion’ pains. My big assumption here is that your daughter is on absolutely no medication. If she is taking any medication I would check side effects at www.rxlist.com and drug interactions at www.drugs.com. Tiredness and achey joints can also be caused by medication. This last bit is for your eyes only, because anyone who is on any of the usual Crohn’s/ulcerative colitis medication cannot take the following preparation due to the serious drug interactions, which will endanger therapy and control of their disease. Please note that I am in remission and not taking any Crohn’s type medication – not even maintenance therapy. I notched up significantly last month when I took a 6 day course of St. John’s Wort (one high dose 935 mg tablet per day directly after breakfast). In fact within a period of some 16 hours I noticed a tremendous difference in my well-being and the tiredness that had plagued me since July/August 2003 including 2 weeks in Austria over Xmas almost disappeared. St. John’s Wort has anti-inflammatory, anti-viral and anti-bacterial properties as well as acting as an anti-depressant. Everyone knows about the latter. I have discussed the effect it had with my doctor and a pharmacist. My doctor was a bit nonplussed and had not heard about the significant research that is being carried out. On the otherhand, the pharmacist was extremely interested because he was up on the research and said that in order for it to act as an anti-depressant one has to take it for 1-2 weeks. He said that the researchers do not know what component(s) in St. John’s Wort are efficacious. It appears to be a mixture. Some preparations are calibrated to a concentration of one component and others are calibrated to a concentration of another. The one I took was equivalent to 935 mg St. John’s Wort per tablet, that is 170 mg of a dry extract obtained by 80% methanol volume/volume extraction. There was not mention of it being calibrated to any individual component. So it might be worth a try. It is cheap (at least over here in Germany) and if it is a viral or fungal or bacterial infection it might be knocked on the head and it might additionally ease any inflammation that might be present. By the way I had to stop taking it after 6 days, because it started to eat at my stomach and give me stomach pains. It also has a long list of side-effects in addition to the drug interactions. It actually reduces the effectiveness of the contraceptive pill and cancer/immunosuppressant treatments among others. The romans used to use it on the battlefield to dress wounds (wound-healing). If you want my white paper on it, let me know and I will send it directly to your e-mail address by-passing the newsgroup as it is an off-topic (OT) theme. All the best, Vanny Hi all, I’m not a big poster on message boards, but things have come to such a head that I feel I need to either reach out or explode.  I choose to reach out, as this does not concern me physically, but rather my daughter.  It goes without saying that I’ll do anything for her. Brief synopsis:  20 yo female, UC for 2.5 years, not very well controlled regardless of what regimen she was on.  Pentasa, Asacol, Prednisone then Remicade, followed by Immuran and cyclosporine.  She ended up with PCP pneumonia following the immunosuppressants and after all was said and done has ended up with a colectomy, then an ileo-anal anastamosis with a loop ileostomy.  Lots more stuff involved in between all this, but you get the general idea. My main question is do any of you experience overall body aches and pains? She says she feels like it’s the flu, only the pain is worse.  The worst pain is under and around her stoma, and down in the pouch that has been created. But there is also generalized pain and joint pain.  She was diagnosed with a very small fistula about 5 weeks ago and I know that can account for some of the pain. But this is real, true pain and the surgeon seems either not to care or is baffled by it.  Her pain management is non-existent. After her colectomy surgery she had an end ileostomy with no pain, complications, etc.  After her ‘pouch’ surgery resulting with the loop ileostomy, there have been nothing but problems, pain, etc.  Multiple ER trips and hospitalizations.  I think her total hospital time was over 25 weeks last year.  We are still waiting for her take down surgery (the surgeon just keeps dangling that carrot) and have been told by a couple different surgeons that a lot of these problems will go away once this surgery is done.   We just got home from the hospital last night and the pain is back. Any words of wisdom?  Anything would be appreciated, I am at the end of my rope trying to do the right thing for her.  Please help a mom get some pain relief for her child.  (I know she’s 20, but she’s still my baby!) Thanks for listening. Becky

Response:

Hi Becky, I have cd not uc but I am a strong believer in pain control.  I have had surgeries and I still see my pain management dr.  I go to a pain management dr with the knowledge of the other dr’s, referred out originally by my gi dr directly after my first surgery.  A pain management dr just pays attentions to how they can keep the pain level down and at least comfortable by all sorts of techniques from different medications to physical therapy and so forth.  The pains can come from all kinds of reasons, from the surgery cutting through muscles and nerves to the different medications having side effects like steroids and some of the others out there.  Most of the remaining pain I have now is from still trying to get my bowels regular from this last surgery and from nerve and muscle damage from getting sliced opened.  When her pain is so bad, if she doesn’t have the strength to get the pain relief understood to her gi or surgeon, then step and totally explain the reality to them of the pain she is feeling and what you are doing to try to ease her.  Sometimes they will listen more to a immediate than the patient to realize that the pain is really there, that she is really in pain and unable to sleep, unable to get about like she should and so on.  Make them hear you!  Her age, and this war lately on pain meds over the internet and so forth never helps those of us with chronic illnesses. (Oh my boy is 24 and he too will always be my baby too!  )  I hope this helps a little.  UM MOM Susan

– Hide quoted text — Show quoted text – Hi all, I’m not a big poster on message boards, but things have come to such a head that I feel I need to either reach out or explode.  I choose to reach out, as this does not concern me physically, but rather my daughter.  It goes without saying that I’ll do anything for her. Brief synopsis:  20 yo female, UC for 2.5 years, not very well controlled regardless of what regimen she was on.  Pentasa, Asacol, Prednisone then Remicade, followed by Immuran and cyclosporine.  She ended up with PCP pneumonia following the immunosuppressants and after all was said and done has ended up with a colectomy, then an ileo-anal anastamosis with a loop ileostomy.  Lots more stuff involved in between all this, but you get the general idea. My main question is do any of you experience overall body aches and pains? She says she feels like it’s the flu, only the pain is worse.  The worst pain is under and around her stoma, and down in the pouch that has been created. But there is also generalized pain and joint pain.  She was diagnosed with a very small fistula about 5 weeks ago and I know that can account for some of the pain. But this is real, true pain and the surgeon seems either not to care or is baffled by it.  Her pain management is non-existent. After her colectomy surgery she had an end ileostomy with no pain, complications, etc.  After her ‘pouch’ surgery resulting with the loop ileostomy, there have been nothing but problems, pain, etc.  Multiple ER trips and hospitalizations.  I think her total hospital time was over 25 weeks last year.  We are still waiting for her take down surgery (the surgeon just keeps dangling that carrot) and have been told by a couple different surgeons that a lot of these problems will go away once this surgery is done.   We just got home from the hospital last night and the pain is back. Any words of wisdom?  Anything would be appreciated, I am at the end of my rope trying to do the right thing for her.  Please help a mom get some pain relief for her child.  (I know she’s 20, but she’s still my baby!) Thanks for listening. Becky

Response:

hi becky, my heart goes out to your daughter.  i have 2 of them about that age.  it has to be trying.  i have cd not uc, but i know what complications can be and what extended hospital time is.  my worst was 3 1/2 weeks with the worst pain anyone can imagine (pyoderma gangrenosum and put on drip and demand morphine). i don’t have any operations either, hopefully others can help you there from the group, i am certain some can. my words of wisdom is this.  you sound tenacious, you have to stay that way. don’t get discouraged.  i was misdiagnosed for a very long time and put on treatments that further damaged things.  so you have to continue to go to the right docs until you get one that knows his/her stuff and takes action, knowledgeable action.  so this is more wisdom of, keep doing what you are doing and go after it.  don’t stop.  you might want to consider a more noteworthy, possibly a teaching/research medical center if you haven’t already.  i have found out not all docs are the same.  the knowledge base if vast.  some specialize in what you are dealing with.  pain management.  lack of, is uncalled for in my opinion.  get to a pain management center/clinic/doc.  i am sure you heard this before, so i hate to make this sound trivial, there is pain, there is a reason, it just has not been discovered yet. good luck and let me know how things are going. jeff

– Hide quoted text — Show quoted text – Hi all, I’m not a big poster on message boards, but things have come to such a head that I feel I need to either reach out or explode.  I choose to reach out, as this does not concern me physically, but rather my daughter.  It goes without saying that I’ll do anything for her. Brief synopsis:  20 yo female, UC for 2.5 years, not very well controlled regardless of what regimen she was on.  Pentasa, Asacol, Prednisone then Remicade, followed by Immuran and cyclosporine.  She ended up with PCP pneumonia following the immunosuppressants and after all was said and done has ended up with a colectomy, then an ileo-anal anastamosis with a loop ileostomy.  Lots more stuff involved in between all this, but you get the general idea. My main question is do any of you experience overall body aches and pains? She says she feels like it’s the flu, only the pain is worse.  The worst pain is under and around her stoma, and down in the pouch that has been created. But there is also generalized pain and joint pain.  She was diagnosed with a very small fistula about 5 weeks ago and I know that can account for some of the pain. But this is real, true pain and the surgeon seems either not to care or is baffled by it.  Her pain management is non-existent. After her colectomy surgery she had an end ileostomy with no pain, complications, etc.  After her ‘pouch’ surgery resulting with the loop ileostomy, there have been nothing but problems, pain, etc.  Multiple ER trips and hospitalizations.  I think her total hospital time was over 25 weeks last year.  We are still waiting for her take down surgery (the surgeon just keeps dangling that carrot) and have been told by a couple different surgeons that a lot of these problems will go away once this surgery is done.   We just got home from the hospital last night and the pain is back. Any words of wisdom?  Anything would be appreciated, I am at the end of my rope trying to do the right thing for her.  Please help a mom get some pain relief for her child.  (I know she’s 20, but she’s still my baby!) Thanks for listening. Becky

Response:

Becky, I am sorry to hear that your daughter is in such pain.  She needs to talk with her GI and surgeon to determine if the pain is from the surgery, the side effects of long term pred. use or what.  Unfortunately, some people experience horrendous pain after surgery that does not go away and which medicine can not yet explain.  If they can’t find and treat the problem, then a consultation with a pain management specialist is in order.  She does not have to continue to suffer.  Good luck!  mgbio – Hide quoted text — Show quoted text – Hi all, I’m not a big poster on message boards, but things have come to such a head that I feel I need to either reach out or explode.  I choose to reach out, as this does not concern me physically, but rather my daughter.  It goes without saying that I’ll do anything for her.   Brief synopsis:  20 yo female, UC for 2.5 years, not very well controlled regardless of what regimen she was on.  Pentasa, Asacol, Prednisone then Remicade, followed by Immuran and cyclosporine.  She ended up with PCP pneumonia following the immunosuppressants and after all was said and done has ended up with a colectomy, then an ileo-anal anastamosis with a loop ileostomy.  Lots more stuff involved in between all this, but you get the general idea.   My main question is do any of you experience overall body aches and pains?  She says she feels like it’s the flu, only the pain is worse.  The worst pain is under and around her stoma, and down in the pouch that has been created.  But there is also generalized pain and joint pain.  She was diagnosed with a very small fistula about 5 weeks ago and I know that can account for some of the pain. But this is real, true pain and the surgeon seems either not to care or is baffled by it.  Her pain management is non-existent. After her colectomy surgery she had an end ileostomy with no pain, complications, etc.  After her ‘pouch’ surgery resulting with the loop ileostomy, there have been nothing but problems, pain, etc.  Multiple ER trips and hospitalizations.  I think her total hospital time was over 25 weeks last year.  We are still waiting for her take down surgery (the surgeon just keeps dangling that carrot) and have been told by a couple different surgeons that a lot of these problems will go away once this surgery is done.   We just got home from the hospital last night and the pain is back.   Any words of wisdom?  Anything would be appreciated, I am at the end of my rope trying to do the right thing for her.  Please help a mom get some pain relief for her child.  (I know she’s 20, but she’s still my baby!) Thanks for listening. Becky

Response:

Hi all, I’m not a big poster on message boards, but things have come to such a head that I feel I need to either reach out or explode.  I choose to reach out, as this does not concern me physically, but rather my daughter.  It goes without saying that I’ll do anything for her.   Brief synopsis:  20 yo female, UC for 2.5 years, not very well controlled regardless of what regimen she was on.  Pentasa, Asacol, Prednisone then Remicade, followed by Immuran and cyclosporine.  She ended up with PCP pneumonia following the immunosuppressants and after all was said and done has ended up with a colectomy, then an ileo-anal anastamosis with a loop ileostomy.  Lots more stuff involved in between all this, but you get the general idea.   My main question is do any of you experience overall body aches and pains?  She says she feels like it’s the flu, only the pain is worse.  The worst pain is under and around her stoma, and down in the pouch that has been created.  But there is also generalized pain and joint pain.  She was diagnosed with a very small fistula about 5 weeks ago and I know that can account for some of the pain. But this is real, true pain and the surgeon seems either not to care or is baffled by it.  Her pain management is non-existent. After her colectomy surgery she had an end ileostomy with no pain, complications, etc.  After her ‘pouch’ surgery resulting with the loop ileostomy, there have been nothing but problems, pain, etc.  Multiple ER trips and hospitalizations.  I think her total hospital time was over 25 weeks last year.  We are still waiting for her take down surgery (the surgeon just keeps dangling that carrot) and have been told by a couple different surgeons that a lot of these problems will go away once this surgery is done.   We just got home from the hospital last night and the pain is back.   Any words of wisdom?  Anything would be appreciated, I am at the end of my rope trying to do the right thing for her.  Please help a mom get some pain relief for her child.  (I know she’s 20, but she’s still my baby!) Thanks for listening. Becky

Response:

Question:

Hi Jeffy,         Thanks.         My doctor called back and agreed that I should just stop it but I could not get him to discuss it to find out why.  Maybe when I see in next month. i too take the same dosage, never read anything nor do i have thos sx’s. jeffy Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa?

– Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

no, not. jeffy

– Hide quoted text — Show quoted text – I was never told or even seen anything that said Pentasa was to help joint pain or exhaustive feeling we get fighting the IBD.  I thought it only worked inside where the med got into the gut.  Does anyone know if Pentasa is a safe anti-inflamatory for joints or anything else?  UM MOM Susan Hi Susan, That was a fast response!  Thanks. I’ve been on the Purinethol for over a year now and have not noticed any bad side effects.  I did try stopping it for a week a few months after starting and my fatigue got so much worse that I went back on it before finishing the week. My GI decided to put me back on Pentasa after my last Remicade infusion significantly reduced my joint pain so this is the first time I’ve used it since January of 2002.  The impression I got was that he figured my joint pain was from inflammation so he put me on something to reduce the inflammation. I find it ironic that a medication, prescribed to treat my fatigue and joint pain, ended up increasing my fatigue and joint pain. Take care, http://www.crohns.org.uk/docs/9b.htm http://ibscrohns.about.com/library/sideeffects/bl6mp.htm Purinethol, you might want to check out these side effects too. http://www.rxlist.com/frame/display.cgi?drug=Entocort All of these and the ones for asacol all say if you have symptoms like you describe or others symptoms to stop immediately and call your dr.  That is what I did when I reacted so poorly to the asacol.  But we took me up real slow on the Pentasa to make sure I didn’t react the same way.  I hope this helps.  If you want more you know where I am!  UM MOM Susan Hi Susan, Thanks, I already did. My first GI had me on Prednisone and Pentasa and my current doctor stopped the Pentasa cold (when he switched me to Purinethol) so there shouldn’t be an issue with my just stopping. I checked rxlist.com but all I found was http://www.subscriberx.com/.SRX?Service=SRXLeaflet&Function=GetLeafle… I d=2201&Dialect=English which only covers these symptoms as "other".  Did you get to a different page? Take care, Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? <snip — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

i too take the same dosage, never read anything nor do i have thos sx’s. jeffy

– Hide quoted text — Show quoted text – Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? My doctor put me on 4 grams of Pentasa per day in addition to the Purinethol.  2 grams in the morning and 2 grams in the evening. The day after I started this, I felt worse than usual; more fatigue and more aches and pains.  I kept taking it assuming that I was having a bad day but the feeling persisted.  I stopped after several days for about a week, until I was feeling my best. I tried it again but only for two days as I got sicker again; same symptoms, more fatigue, more aches and pains.  The day after I stopped I was feeling better again. I read the information about Pentasa that came from the pharmacy but did not see anything about these symptoms. — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

BINGO docs are now realizing that the fatigue side effect which is not discussed as it should be w patients and the general ineffectivenss of pentasa asacol etc in patients has shifted toward the below shift in treatment toward imuran /6mp as front line treatment Susan, Medscape has a very interesting multimedia presentation on a conferance at http://www.medscape.com/viewprogram/2051 Apparently there have been some studies that may show that mesalamine and sulfasalazine aren’t quite as effective as previously thought, in that they do nothing to stop the natural progression of cd, just a temporary remission in cases.  They also cited studies where the 5-ASA’s might be even more ineffective after a patient has been treated with steroids like prednisone.  It appears the community is starting to lean towards immuno-modulators as a more effective first line of defense.   However, there is a lack of clinical studies in this area, so the data really isn’t there yet.  Keep in mind that the conference was sponsered in part by Centacor, but I didn’t see anything about the studies cited also being sponsored by Centacor.  There may be some info in there that your dr could shed some more light on.  Hope this helps. Jeff S

Response:

My drs always said this after surgery and diagnosis.  But my drs also think that pred is the last one to use.  Remicade has never been spoken of in length for these are in case the CD is active and aggressive. I saw the medline yesterday too thanks.  UM MOM Susan

– Hide quoted text — Show quoted text – BINGO docs are now realizing that the fatigue side effect which is not discussed as it should be w patients and the general ineffectivenss of pentasa asacol etc in patients has shifted toward the below shift in treatment toward imuran /6mp as front line treatment Susan, Medscape has a very interesting multimedia presentation on a conferance at http://www.medscape.com/viewprogram/2051 Apparently there have been some studies that may show that mesalamine and sulfasalazine aren’t quite as effective as previously thought, in that they do nothing to stop the natural progression of cd, just a temporary remission in cases.  They also cited studies where the 5-ASA’s might be even more ineffective after a patient has been treated with steroids like prednisone.  It appears the community is starting to lean towards immuno-modulators as a more effective first line of defense. However, there is a lack of clinical studies in this area, so the data really isn’t there yet.  Keep in mind that the conference was sponsered in part by Centacor, but I didn’t see anything about the studies cited also being sponsored by Centacor.  There may be some info in there that your dr could shed some more light on.  Hope this helps. Jeff S

Response:

        Hi Susan,         I can’t say how long it takes an improvement to show up but the day after I started using Pentasa I got sicker so I know it works that fast for me.         Good luck with your doctor appointment. Wanted to add that I am starting to wonder if the Pentasa is working!  I still feel lousy and can’t remember how long the upped dose took to show a real change.  Do you remember?  UM MOM Susan.ps have a dr appt tomorrow and plan on asking for pain help. Need to get my questions together.

– Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

        Hi Susan,         As I understand it, the inflammation caused by CD produces symptoms like fatigue and joint pain.  So anti-inflammatory medicines, by reducing the inflammation in the gut, are supposed to help with secondary symptoms. – Hide quoted text — Show quoted text – I was never told or even seen anything that said Pentasa was to help joint pain or exhaustive feeling we get fighting the IBD.  I thought it only worked inside where the med got into the gut.  Does anyone know if Pentasa is a safe anti-inflamatory for joints or anything else?  UM MOM Susan Hi Susan, That was a fast response!  Thanks. I’ve been on the Purinethol for over a year now and have not noticed any bad side effects.  I did try stopping it for a week a few months after starting and my fatigue got so much worse that I went back on it before finishing the week. My GI decided to put me back on Pentasa after my last Remicade infusion significantly reduced my joint pain so this is the first time I’ve used it since January of 2002.  The impression I got was that he figured my joint pain was from inflammation so he put me on something to reduce the inflammation. I find it ironic that a medication, prescribed to treat my fatigue and joint pain, ended up increasing my fatigue and joint pain.

– Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

Wanted to add that I am starting to wonder if the Pentasa is working!  I still feel lousy and can’t remember how long the upped dose took to show a real change.  Do you remember?  UM MOM Susan.ps have a dr appt tomorrow and plan on asking for pain help. Need to get my questions together.

Susan, Medscape has a very interesting multimedia presentation on a conferance at http://www.medscape.com/viewprogram/2051 Apparently there have been some studies that may show that mesalamine and sulfasalazine aren’t quite as effective as previously thought, in that they do nothing to stop the natural progression of cd, just a temporary remission in cases.  They also cited studies where the 5-ASA’s might be even more ineffective after a patient has been treated with steroids like prednisone.  It appears the community is starting to lean towards immuno-modulators as a more effective first line of defense.   However, there is a lack of clinical studies in this area, so the data really isn’t there yet.  Keep in mind that the conference was sponsered in part by Centacor, but I didn’t see anything about the studies cited also being sponsored by Centacor.  There may be some info in there that your dr could shed some more light on.  Hope this helps. Jeff S

Response:

I’ll take a look later, I bookmarked it.  My gi always said he had his own doubts about these meds preventing the disease.  Right now we are using it because I get inflamed so easily it seems. Thanks, UM MOM Susan

– Hide quoted text — Show quoted text – Wanted to add that I am starting to wonder if the Pentasa is working!  I still feel lousy and can’t remember how long the upped dose took to show a real change.  Do you remember?  UM MOM Susan.ps have a dr appt tomorrow and plan on asking for pain help. Need to get my questions together. Susan, Medscape has a very interesting multimedia presentation on a conferance at http://www.medscape.com/viewprogram/2051 Apparently there have been some studies that may show that mesalamine and sulfasalazine aren’t quite as effective as previously thought, in that they do nothing to stop the natural progression of cd, just a temporary remission in cases.  They also cited studies where the 5-ASA’s might be even more ineffective after a patient has been treated with steroids like prednisone.  It appears the community is starting to lean towards immuno-modulators as a more effective first line of defense. However, there is a lack of clinical studies in this area, so the data really isn’t there yet.  Keep in mind that the conference was sponsered in part by Centacor, but I didn’t see anything about the studies cited also being sponsored by Centacor.  There may be some info in there that your dr could shed some more light on.  Hope this helps. Jeff S

Response:

Wanted to add that I am starting to wonder if the Pentasa is working!  I still feel lousy and can’t remember how long the upped dose took to show a real change.  Do you remember?  UM MOM Susan.ps have a dr appt tomorrow and plan on asking for pain help. Need to get my questions together.

– Hide quoted text — Show quoted text – I was never told or even seen anything that said Pentasa was to help joint pain or exhaustive feeling we get fighting the IBD.  I thought it only worked inside where the med got into the gut.  Does anyone know if Pentasa is a safe anti-inflamatory for joints or anything else?  UM MOM Susan Hi Susan, That was a fast response!  Thanks. I’ve been on the Purinethol for over a year now and have not noticed any bad side effects.  I did try stopping it for a week a few months after starting and my fatigue got so much worse that I went back on it before finishing the week. My GI decided to put me back on Pentasa after my last Remicade infusion significantly reduced my joint pain so this is the first time I’ve used it since January of 2002.  The impression I got was that he figured my joint pain was from inflammation so he put me on something to reduce the inflammation. I find it ironic that a medication, prescribed to treat my fatigue and joint pain, ended up increasing my fatigue and joint pain. Take care, http://www.crohns.org.uk/docs/9b.htm http://ibscrohns.about.com/library/sideeffects/bl6mp.htm Purinethol, you might want to check out these side effects too. http://www.rxlist.com/frame/display.cgi?drug=Entocort All of these and the ones for asacol all say if you have symptoms like you describe or others symptoms to stop immediately and call your dr.  That is what I did when I reacted so poorly to the asacol.  But we took me up real slow on the Pentasa to make sure I didn’t react the same way.  I hope this helps.  If you want more you know where I am!  UM MOM Susan Hi Susan, Thanks, I already did. My first GI had me on Prednisone and Pentasa and my current doctor stopped the Pentasa cold (when he switched me to Purinethol) so there shouldn’t be an issue with my just stopping. I checked rxlist.com but all I found was http://www.subscriberx.com/.SRX?Service=SRXLeaflet&Function=GetLeafle… I d=2201&Dialect=English which only covers these symptoms as "other".  Did you get to a different page? Take care, Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? <snip — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

I was never told or even seen anything that said Pentasa was to help joint pain or exhaustive feeling we get fighting the IBD.  I thought it only worked inside where the med got into the gut.  Does anyone know if Pentasa is a safe anti-inflamatory for joints or anything else?  UM MOM Susan

– Hide quoted text — Show quoted text – Hi Susan, That was a fast response!  Thanks. I’ve been on the Purinethol for over a year now and have not noticed any bad side effects.  I did try stopping it for a week a few months after starting and my fatigue got so much worse that I went back on it before finishing the week. My GI decided to put me back on Pentasa after my last Remicade infusion significantly reduced my joint pain so this is the first time I’ve used it since January of 2002.  The impression I got was that he figured my joint pain was from inflammation so he put me on something to reduce the inflammation. I find it ironic that a medication, prescribed to treat my fatigue and joint pain, ended up increasing my fatigue and joint pain. Take care, http://www.crohns.org.uk/docs/9b.htm http://ibscrohns.about.com/library/sideeffects/bl6mp.htm Purinethol, you might want to check out these side effects too. http://www.rxlist.com/frame/display.cgi?drug=Entocort All of these and the ones for asacol all say if you have symptoms like you describe or others symptoms to stop immediately and call your dr.  That is what I did when I reacted so poorly to the asacol.  But we took me up real slow on the Pentasa to make sure I didn’t react the same way.  I hope this helps.  If you want more you know where I am!  UM MOM Susan Hi Susan, Thanks, I already did. My first GI had me on Prednisone and Pentasa and my current doctor stopped the Pentasa cold (when he switched me to Purinethol) so there shouldn’t be an issue with my just stopping. I checked rxlist.com but all I found was http://www.subscriberx.com/.SRX?Service=SRXLeaflet&Function=GetLeafle… I d=2201&Dialect=English which only covers these symptoms as "other".  Did you get to a different page? Take care, Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? <snip — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

        Hi Susan,         That was a fast response!  Thanks.         I’ve been on the Purinethol for over a year now and have not noticed any bad side effects.  I did try stopping it for a week a few months after starting and my fatigue got so much worse that I went back on it before finishing the week.         My GI decided to put me back on Pentasa after my last Remicade infusion significantly reduced my joint pain so this is the first time I’ve used it since January of 2002.  The impression I got was that he figured my joint pain was from inflammation so he put me on something to reduce the inflammation.         I find it ironic that a medication, prescribed to treat my fatigue and joint pain, ended up increasing my fatigue and joint pain.         Take care, – Hide quoted text — Show quoted text – http://www.crohns.org.uk/docs/9b.htm http://ibscrohns.about.com/library/sideeffects/bl6mp.htm Purinethol, you might want to check out these side effects too. http://www.rxlist.com/frame/display.cgi?drug=Entocort All of these and the ones for asacol all say if you have symptoms like you describe or others symptoms to stop immediately and call your dr.  That is what I did when I reacted so poorly to the asacol.  But we took me up real slow on the Pentasa to make sure I didn’t react the same way.  I hope this helps.  If you want more you know where I am!  UM MOM Susan Hi Susan, Thanks, I already did. My first GI had me on Prednisone and Pentasa and my current doctor stopped the Pentasa cold (when he switched me to Purinethol) so there shouldn’t be an issue with my just stopping. I checked rxlist.com but all I found was http://www.subscriberx.com/.SRX?Service=SRXLeaflet&Function=GetLeafle… d=2201&Dialect=English which only covers these symptoms as "other".  Did you get to a different page? Take care, Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa?

<snip — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

http://www.crohns.org.uk/docs/9b.htm http://ibscrohns.about.com/library/sideeffects/bl6mp.htm Purinethol, you might want to check out these side effects too. http://www.rxlist.com/frame/display.cgi?drug=Entocort All of these and the ones for asacol all say if you have symptoms like you describe or others symptoms to stop immediately and call your dr.  That is what I did when I reacted so poorly to the asacol.  But we took me up real slow on the Pentasa to make sure I didn’t react the same way.  I hope this helps.  If you want more you know where I am!  UM MOM Susan

Hi Susan, Thanks, I already did. My first GI had me on Prednisone and Pentasa and my current doctor stopped the Pentasa cold (when he switched me to Purinethol) so there shouldn’t be an issue with my just stopping. I checked rxlist.com but all I found was

http://www.subscriberx.com/.SRX?Service=SRXLeaflet&Function=GetLeafle… d=2201&Dialect=English – Hide quoted text — Show quoted text – which only covers these symptoms as "other".  Did you get to a different page? Take care, Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? My doctor put me on 4 grams of Pentasa per day in addition to the Purinethol.  2 grams in the morning and 2 grams in the evening. The day after I started this, I felt worse than usual; more fatigue and more aches and pains.  I kept taking it assuming that I was having a bad day but the feeling persisted.  I stopped after several days for about a week, until I was feeling my best. I tried it again but only for two days as I got sicker again; same symptoms, more fatigue, more aches and pains.  The day after I stopped I was feeling better again. I read the information about Pentasa that came from the pharmacy but did not see anything about these symptoms. — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan

– Hide quoted text — Show quoted text – Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? My doctor put me on 4 grams of Pentasa per day in addition to the Purinethol.  2 grams in the morning and 2 grams in the evening. The day after I started this, I felt worse than usual; more fatigue and more aches and pains.  I kept taking it assuming that I was having a bad day but the feeling persisted.  I stopped after several days for about a week, until I was feeling my best. I tried it again but only for two days as I got sicker again; same symptoms, more fatigue, more aches and pains.  The day after I stopped I was feeling better again. I read the information about Pentasa that came from the pharmacy but did not see anything about these symptoms. — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

        Hi Susan,         Thanks, I already did.         My first GI had me on Prednisone and Pentasa and my current doctor stopped the Pentasa cold (when he switched me to Purinethol) so there shouldn’t be an issue with my just stopping.         I checked rxlist.com but all I found was http://www.subscriberx.com/.SRX?Service=SRXLeaflet&Function=GetLeafle… which only covers these symptoms as "other".  Did you get to a different page?         Take care, – Hide quoted text — Show quoted text – Luke call your dr.  If you check rxlist.com you will see that these are possibles and it recommends calling your dr about it.  UM MOM Susan Hi everyone, Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa? My doctor put me on 4 grams of Pentasa per day in addition to the Purinethol.  2 grams in the morning and 2 grams in the evening. The day after I started this, I felt worse than usual; more fatigue and more aches and pains.  I kept taking it assuming that I was having a bad day but the feeling persisted.  I stopped after several days for about a week, until I was feeling my best. I tried it again but only for two days as I got sicker again; same symptoms, more fatigue, more aches and pains.  The day after I stopped I was feeling better again. I read the information about Pentasa that came from the pharmacy but did not see anything about these symptoms.

– Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

Hi everyone,         Does anyone know about getting fatigue and aches & pains as a side effect from Pentasa?         My doctor put me on 4 grams of Pentasa per day in addition to the Purinethol.  2 grams in the morning and 2 grams in the evening.         The day after I started this, I felt worse than usual; more fatigue and more aches and pains.  I kept taking it assuming that I was having a bad day but the feeling persisted.  I stopped after several days for about a week, until I was feeling my best.         I tried it again but only for two days as I got sicker again; same symptoms, more fatigue, more aches and pains.  The day after I stopped I was feeling better again.         I read the information about Pentasa that came from the pharmacy but did not see anything about these symptoms. — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

Question:

only your hair dresser knows fow weel!!! jeffy

– Hide quoted text — Show quoted text – The average for hair lose is 100 to 150 a day.  and there are 3 stages of hair growth and in the resting stage you may lose more.  Rogaine won’t do much for you and if you do get any hair growth from it, once you stop using it the hairs will fall out. — Take Care, Sherry  :o) (To reply remove nospam from addie.) Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki Pat I found with the asacol even after I had to stop taking it my hair was still falling out for a few months.  Now with the pentasa it’s falling out in strands not clumps.  UM MOM Susan Oh boy – I know exactly what you mean about knowing you’ll be bald. I thought my hair loss was from Asacol but after going off it, I continued  to lose hair for over 3 months.  So I realized it wasn’t from the Asacol. My doctor thinks it’s from the operation I had in February and from all the stress I had in my life. My hair finally quit falling out after about 6 months.  I lost so much hair!!  Now that it’s growing back in, I have all these short hairs  sticking up all over – they look so messy but I don’t care because at least they’re growing. I have went on and off Asacol 3 times now.  I lost hair the second time I went on it but not the first time.  And like I said – this last time I  don’t think it was the Asacol since my hair continued to fall out after going  off it.  It was very weird when it quit falling out – one day it was still coming out in major amounts and the next day it just stopped.  I hope you find out what it is that’s making it fall out – I really know how you  feel! ~~~~Pat CD Class of 98 "Nikki" wrote Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Hi Nikki – I had MAJOR hair loss when I was on Asacol!  I mean it was literally coming out in clumps.  This went on for a few months until my gi finally got the message and switched me to hydrocortisone enemas.  In the meantime, I had lost so much that I had to cut all my hair off very short. I’d had long hair all my life so it was a big step, but the only solution. It eventually started to grow back again several months later, but never really thick.  Have been on Colazal for the last 4 months and hair was doing great until just last couple of weeks when I had some problems and now I notice it’s getting a bit thinner again.  This time, though, I think it’s mainly cause of being slightly more anemic than usual but slightly flaring. This short dose of low dose pred (ugh) should take care of that though. Hair loss unfortunately seems to be a side effect of all the 5-asa meds. Hope you get some positive results soon.  And congrats on your nice long remission! Christine UC Class of 01

– Hide quoted text — Show quoted text – Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

I do have very long hair, but I asked this question of a few doctors and they all said the length of your hair does not affect how much falls out.  Unless, that is, there is a problem with your scalp, and mine is fine I guess.  I’ve spent so long trying to grow my hair out, and have had it long for many years.  I think cutting it short would actually end up making me more depressed, knowing the reason I cut it (because of the hair loss).  I’ve just found out that my protein levels are pretty low, so I"m hoping that if I can get those up, it might stop the hair loss, or at least give me more of a clue as to why it is happening.  I guess all of us with UC have problems absorbing protein, even if the disease isn’t active.  So this is one path for me to go down! Thanks for the info! Nikki – Hide quoted text — Show quoted text – Nikki, do you have long hair?  The reason I ask is when my was falling out in clumps I went and had my hair cut off (it was to my waiste at the time). I almost had a boys cut then but the point is that if your hair is long, it is heavy and cutting mine short I could tell how heavy my hair was pulling on my scalp and head.  After I did this, in a short time the hair stopped falling out and the bald spots (that I could see then) started to fill in nicely.  It seemed like forever expecially with the hairs sticking up but it took me almost a year for the bald spots to fill in , but I had a lot of them by then.   My hair loss then was from bleeding out.  I hope this helps. UMMOM  Susan Nikki, Well, now I understand why you were counting them so – no it doesn’t sound terrible.  I really don’t think doctors know what to do about hair loss.  I know of two people over the years who were losing hair and their doctors didn’t do anything for them.  The hair eventually quit falling out so  there was no reason after that to do anything.  Maybe the doctors just figure that’s what will happen in most cases so it’s not a big deal to them??? I was complaining to my family about my hair and since they couldn’t see  it, they ignored my complaints.  Then a few of my eyelashes fell out – right  in the middle! – very noticeable.  That’s when I quit the Asacol.  (It takes  a very long time to regrow eyelashes.) Now that I have all these hairs sticking up all over my head that aren’t long enough to lay down, they can see why I was complaining. I hope your hair stops falling out.  A year is long enough!  Let us know what happens.  Now I’m scared to go back on the Asacol.  If it was the Asacol and it took 3 months this time for it to stop – how long will it be next time? ~~~~Pat CD Class of 98 "Nikki" wrote Pat, I know counting the hairs seems terrible, doesn’t it?  But I have been so frustrated with my dermatolgist’s non-help that I felt it was the only way to prove to her that I AM losing hair!  She sees no bald spots (yet) and thinks it is fine, but I notice the extra amount coming out when I wash, comb, or just sit and it is all over my chair!  In the morning alone I wake up and have 10 hanging off my head waiting to fall.  Unreal.  I don’t even count them all either, just get to around 150, see the pile still remaining, and figure ‘well, I am already over the limit now, why keep counting?’  If anything I probably hope the count will be a little less one day, guess I’m grasping to any hope here The Rogaine is pretty useless, and it did take me 6 months before I resorted to it.  I guess maybe it gives me more hope that I am trying to combat it somehow! Nikki

Response:

Well, I found out what my ferritin (protein) level is and it is 29, WAY low (even though the range is 12-150, 29 is sure on the low end of that scale.  Seems malabsorption of protein may be the cause.  Do any of you take iron/protein pills or supplements?  I left a msg for my GI seeing if he had any advice, his nurse said that even if the UC isn’t active, you can still have malabsorption issues. Thanks! Nikki – Hide quoted text — Show quoted text – Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Nikki, do you have long hair?  The reason I ask is when my was falling out in clumps I went and had my hair cut off (it was to my waiste at the time). I almost had a boys cut then but the point is that if your hair is long, it is heavy and cutting mine short I could tell how heavy my hair was pulling on my scalp and head.  After I did this, in a short time the hair stopped falling out and the bald spots (that I could see then) started to fill in nicely.  It seemed like forever expecially with the hairs sticking up but it took me almost a year for the bald spots to fill in , but I had a lot of them by then.   My hair loss then was from bleeding out.  I hope this helps. UMMOM  Susan

– Hide quoted text — Show quoted text – Nikki, Well, now I understand why you were counting them so – no it doesn’t sound terrible.  I really don’t think doctors know what to do about hair loss. I know of two people over the years who were losing hair and their doctors didn’t do anything for them.  The hair eventually quit falling out so there was no reason after that to do anything.  Maybe the doctors just figure that’s what will happen in most cases so it’s not a big deal to them??? I was complaining to my family about my hair and since they couldn’t see it, they ignored my complaints.  Then a few of my eyelashes fell out – right in the middle! – very noticeable.  That’s when I quit the Asacol.  (It takes a very long time to regrow eyelashes.) Now that I have all these hairs sticking up all over my head that aren’t long enough to lay down, they can see why I was complaining. I hope your hair stops falling out.  A year is long enough!  Let us know what happens.  Now I’m scared to go back on the Asacol.  If it was the Asacol and it took 3 months this time for it to stop – how long will it be next time? ~~~~Pat CD Class of 98 "Nikki" wrote Pat, I know counting the hairs seems terrible, doesn’t it?  But I have been so frustrated with my dermatolgist’s non-help that I felt it was the only way to prove to her that I AM losing hair!  She sees no bald spots (yet) and thinks it is fine, but I notice the extra amount coming out when I wash, comb, or just sit and it is all over my chair!  In the morning alone I wake up and have 10 hanging off my head waiting to fall.  Unreal.  I don’t even count them all either, just get to around 150, see the pile still remaining, and figure ‘well, I am already over the limit now, why keep counting?’  If anything I probably hope the count will be a little less one day, guess I’m grasping to any hope here The Rogaine is pretty useless, and it did take me 6 months before I resorted to it.  I guess maybe it gives me more hope that I am trying to combat it somehow! Nikki

Response:

Nikki, Well, now I understand why you were counting them so – no it doesn’t sound terrible.  I really don’t think doctors know what to do about hair loss.  I know of two people over the years who were losing hair and their doctors didn’t do anything for them.  The hair eventually quit falling out so there was no reason after that to do anything.  Maybe the doctors just figure that’s what will happen in most cases so it’s not a big deal to them??? I was complaining to my family about my hair and since they couldn’t see it, they ignored my complaints.  Then a few of my eyelashes fell out – right in the middle! – very noticeable.  That’s when I quit the Asacol.  (It takes a very long time to regrow eyelashes.) Now that I have all these hairs sticking up all over my head that aren’t long enough to lay down, they can see why I was complaining. I hope your hair stops falling out.  A year is long enough!  Let us know what happens.  Now I’m scared to go back on the Asacol.  If it was the Asacol and it took 3 months this time for it to stop – how long will it be next time? ~~~~Pat CD Class of 98 – Hide quoted text — Show quoted text -"Nikki" wrote Pat, I know counting the hairs seems terrible, doesn’t it?  But I have been so frustrated with my dermatolgist’s non-help that I felt it was the only way to prove to her that I AM losing hair!  She sees no bald spots (yet) and thinks it is fine, but I notice the extra amount coming out when I wash, comb, or just sit and it is all over my chair!  In the morning alone I wake up and have 10 hanging off my head waiting to fall.  Unreal.  I don’t even count them all either, just get to around 150, see the pile still remaining, and figure ‘well, I am already over the limit now, why keep counting?’  If anything I probably hope the count will be a little less one day, guess I’m grasping to any hope here The Rogaine is pretty useless, and it did take me 6 months before I resorted to it.  I guess maybe it gives me more hope that I am trying to combat it somehow! Nikki

Response:

Pat, I know counting the hairs seems terrible, doesn’t it?  But I have been so frustrated with my dermatolgist’s non-help that I felt it was the only way to prove to her that I AM losing hair!  She sees no bald spots (yet) and thinks it is fine, but I notice the extra amount coming out when I wash, comb, or just sit and it is all over my chair!  In the morning alone I wake up and have 10 hanging off my head waiting to fall.  Unreal.  I don’t even count them all either, just get to around 150, see the pile still remaining, and figure ‘well, I am already over the limit now, why keep counting?’  If anything I probably hope the count will be a little less one day, guess I’m grasping to any hope here The Rogaine is pretty useless, and it did take me 6 months before I resorted to it.  I guess maybe it gives me more hope that I am trying to combat it somehow! Nikki – Hide quoted text — Show quoted text – I have no idea how many hairs I was losing a day.  Unlike Nikki, I didn’t count them!!!  I just know how much usually comes out on my hands when I wash my hair and how much is in my brush after blow-drying.  Besides there being about 3 times that amount, there was also a lot of hair on the bathroom floor after I got done drying it.  Also I would be feeling hairs on my arms all day long.  Now that it’s not falling out anymore there’s a big difference.  I had thought about buying some Rogaine but never got around to it. ~~~~Pat CD Class of 98 "Sherry" wrote The average for hair lose is 100 to 150 a day.  and there are 3 stages of hair growth and in the resting stage you may lose more.  Rogaine won’t do much for you and if you do get any hair growth from it, once you stop  using it the hairs will fall out. — Take Care, Sherry  :o) (To reply remove nospam from addie.) Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki

Response:

Yep it is.  : ) — Take Care, Sherry  :o) (To reply remove nospam from addie.)

– Hide quoted text — Show quoted text – I seem to loose hair for a few months after surgery and was told anesthesia is often responsible. Hugs,  Linda I have no idea how many hairs I was losing a day.  Unlike Nikki, I didn’t count them!!!  I just know how much usually comes out on my hands when I wash my hair and how much is in my brush after blow-drying.  Besides there being about 3 times that amount, there was also a lot of hair on the bathroom floor after I got done drying it.  Also I would be feeling hairs on my arms all day long.  Now that it’s not falling out anymore there’s a big difference.  I had thought about buying some Rogaine but never got around to it. ~~~~Pat CD Class of 98 "Sherry" wrote The average for hair lose is 100 to 150 a day.  and there are 3 stages of hair growth and in the resting stage you may lose more.  Rogaine won’t do much for you and if you do get any hair growth from it, once you stop using it the hairs will fall out. — Take Care, Sherry  :o) (To reply remove nospam from addie.) Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki

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Response:

I seem to loose hair for a few months after surgery and was told anesthesia is often responsible. Hugs,  Linda

– Hide quoted text — Show quoted text – I have no idea how many hairs I was losing a day.  Unlike Nikki, I didn’t count them!!!  I just know how much usually comes out on my hands when I wash my hair and how much is in my brush after blow-drying.  Besides there being about 3 times that amount, there was also a lot of hair on the bathroom floor after I got done drying it.  Also I would be feeling hairs on my arms all day long.  Now that it’s not falling out anymore there’s a big difference.  I had thought about buying some Rogaine but never got around to it. ~~~~Pat CD Class of 98 "Sherry" wrote The average for hair lose is 100 to 150 a day.  and there are 3 stages of hair growth and in the resting stage you may lose more.  Rogaine won’t do much for you and if you do get any hair growth from it, once you stop using it the hairs will fall out. — Take Care, Sherry  :o) (To reply remove nospam from addie.) Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki

Response:

I have no idea how many hairs I was losing a day.  Unlike Nikki, I didn’t count them!!!  I just know how much usually comes out on my hands when I wash my hair and how much is in my brush after blow-drying.  Besides there being about 3 times that amount, there was also a lot of hair on the bathroom floor after I got done drying it.  Also I would be feeling hairs on my arms all day long.  Now that it’s not falling out anymore there’s a big difference.  I had thought about buying some Rogaine but never got around to it. ~~~~Pat CD Class of 98 – Hide quoted text — Show quoted text -"Sherry" wrote The average for hair lose is 100 to 150 a day.  and there are 3 stages of hair growth and in the resting stage you may lose more.  Rogaine won’t do much for you and if you do get any hair growth from it, once you stop using it the hairs will fall out. — Take Care, Sherry  :o) (To reply remove nospam from addie.) Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki

Response:

The average for hair lose is 100 to 150 a day.  and there are 3 stages of hair growth and in the resting stage you may lose more.  Rogaine won’t do much for you and if you do get any hair growth from it, once you stop using it the hairs will fall out. — Take Care, Sherry  :o) (To reply remove nospam from addie.)

Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki

– Hide quoted text — Show quoted text – Pat I found with the asacol even after I had to stop taking it my hair was still falling out for a few months.  Now with the pentasa it’s falling out in strands not clumps.  UM MOM Susan Oh boy – I know exactly what you mean about knowing you’ll be bald.  I thought my hair loss was from Asacol but after going off it, I continued  to lose hair for over 3 months.  So I realized it wasn’t from the Asacol. My doctor thinks it’s from the operation I had in February and from all the stress I had in my life. My hair finally quit falling out after about 6 months.  I lost so much hair!!  Now that it’s growing back in, I have all these short hairs  sticking up all over – they look so messy but I don’t care because at least they’re growing. I have went on and off Asacol 3 times now.  I lost hair the second time I went on it but not the first time.  And like I said – this last time I  don’t think it was the Asacol since my hair continued to fall out after going  off it.  It was very weird when it quit falling out – one day it was still coming out in major amounts and the next day it just stopped.  I hope you find out what it is that’s making it fall out – I really know how you  feel! ~~~~Pat CD Class of 98 "Nikki" wrote Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

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Response:

Simple answer is yes.  Talk to your gi about it.  I had malabsorption even before surgery.  UM MOM Susan

Actually, I just have full bloodwork done about 3 weeks ago to check iron, thyroid, hormones, and I don’t know what else.  All things that can cause hairloss.  The dermatologist told me there is no way to tell if the Pentasa is actually causing the loss (besides to stop it).  I did actually go down to 6 pills/day from 9/day about 3 weeks ago, and have no symptoms returning yet.  So I guess I’ll see if that helps at all. Can you have malabsorption when you aren’t bleeding at all?  Maybe something to as my gastro doc if that is the case. Thanks, Nikki

– Hide quoted text — Show quoted text – Nikki when was your last blood tests done for mal absorptions and blood counts and so forth?  Maybe this needs to be done to see if it is the meds or something else.  UM MOM Susan Nope, luckily I haven’t had any bleeding in over 5 years now.  I haven’t had a flare of my UC in all that time, the meds seem to be keeping my in remision (along with trying to stay healthy, eat right, exercise).  I know that when you are bleeding you can become anemic, which can then cause hair loss.  But for me I guess I am wondering if it can just be the meds, since I haven’t been sick in so long. Nikki I has hair loss from the asacol but got deathly sick and got changed to Pentasa where I still am loosing hair but no bald spots, knock on wood.  Are you bleeding at all?  I had a lot of hair loss when I was bleeding and  had to keep having transfusion.  UM MOM Susan Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Mine is definitely strands, but ALOT of them.  But my hair is so long that it is almost hard to tell, I actually have to count them to get a good idea.  I am losing about 150 hairs/day at least, up to 200 at times.  The average is something like 50-100, and I am well over that!  I resorted to Rogaine, although it sure isn’t doing much.  I know when I switched meds last year, my gastro told me it would take about 2-3  months before it would stop falling out (if the meds were what was causing it).  It did slow down actually after about 3-4 months. Although now that it is back, I’m not sure if it was the Asacol or not.  It’s all such a trial and error process, and it takes months to know if switching meds even helps. Nikki – Hide quoted text — Show quoted text – Pat I found with the asacol even after I had to stop taking it my hair was still falling out for a few months.  Now with the pentasa it’s falling out in strands not clumps.  UM MOM Susan Oh boy – I know exactly what you mean about knowing you’ll be bald.  I thought my hair loss was from Asacol but after going off it, I continued  to lose hair for over 3 months.  So I realized it wasn’t from the Asacol.  My doctor thinks it’s from the operation I had in February and from all the stress I had in my life. My hair finally quit falling out after about 6 months.  I lost so much hair!!  Now that it’s growing back in, I have all these short hairs  sticking up all over – they look so messy but I don’t care because at least they’re growing. I have went on and off Asacol 3 times now.  I lost hair the second time I went on it but not the first time.  And like I said – this last time I  don’t think it was the Asacol since my hair continued to fall out after going  off it.  It was very weird when it quit falling out – one day it was still coming out in major amounts and the next day it just stopped.  I hope you find out what it is that’s making it fall out – I really know how you  feel! ~~~~Pat CD Class of 98 "Nikki" wrote Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Actually, I just have full bloodwork done about 3 weeks ago to check iron, thyroid, hormones, and I don’t know what else.  All things that can cause hairloss.  The dermatologist told me there is no way to tell if the Pentasa is actually causing the loss (besides to stop it).  I did actually go down to 6 pills/day from 9/day about 3 weeks ago, and have no symptoms returning yet.  So I guess I’ll see if that helps at all. Can you have malabsorption when you aren’t bleeding at all?  Maybe something to as my gastro doc if that is the case. Thanks, Nikki – Hide quoted text — Show quoted text – Nikki when was your last blood tests done for mal absorptions and blood counts and so forth?  Maybe this needs to be done to see if it is the meds or something else.  UM MOM Susan Nope, luckily I haven’t had any bleeding in over 5 years now.  I haven’t had a flare of my UC in all that time, the meds seem to be keeping my in remision (along with trying to stay healthy, eat right, exercise).  I know that when you are bleeding you can become anemic, which can then cause hair loss.  But for me I guess I am wondering if it can just be the meds, since I haven’t been sick in so long. Nikki I has hair loss from the asacol but got deathly sick and got changed to Pentasa where I still am loosing hair but no bald spots, knock on wood.  Are you bleeding at all?  I had a lot of hair loss when I was bleeding and  had to keep having transfusion.  UM MOM Susan Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

mesalazine, a 5ASA like Asacol and Pentasa. Amy. – Hide quoted text — Show quoted text – What is Mesasal?  UM MOM Susan Hi Nikki, I started experiencing hair loss too, it started about a month after I got out of hospital after a 5 week stay. I was on Mesasal at the time, as well as pred. I started Imuran after my hair was already falling out, then all of a sudden it stopped falling out about 3 months later. I have those short bits that Pat mentioned, but at least it is growing back because my hair was already thin. So my impression is that my hair loss was unrelated to the medications, as it stopped while I was still taking them. It may have been something to do with the loss of nutrients or something after a bad bout of bleeding. I should add that I was diagnosed with UC while in hospital, so I had only been taking Mesasal for a short amount of time. Good luck, I hope you find out what the cause is! When I was complaining about my hair loss to my doctor, he pointed to his almost bald head and said "don’t worry, it won’t get to this stage". Amy. Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Hi Nikki, I started experiencing hair loss too, it started about a month after I got out of hospital after a 5 week stay. I was on Mesasal at the time, as well as pred. I started Imuran after my hair was already falling out, then all of a sudden it stopped falling out about 3 months later. I have those short bits that Pat mentioned, but at least it is growing back because my hair was already thin. So my impression is that my hair loss was unrelated to the medications, as it stopped while I was still taking them. It may have been something to do with the loss of nutrients or something after a bad bout of bleeding. I should add that I was diagnosed with UC while in hospital, so I had only been taking Mesasal for a short amount of time. Good luck, I hope you find out what the cause is! When I was complaining about my hair loss to my doctor, he pointed to his almost bald head and said "don’t worry, it won’t get to this stage". Amy. – Hide quoted text — Show quoted text – Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

What is Mesasal?  UM MOM Susan

– Hide quoted text — Show quoted text – Hi Nikki, I started experiencing hair loss too, it started about a month after I got out of hospital after a 5 week stay. I was on Mesasal at the time, as well as pred. I started Imuran after my hair was already falling out, then all of a sudden it stopped falling out about 3 months later. I have those short bits that Pat mentioned, but at least it is growing back because my hair was already thin. So my impression is that my hair loss was unrelated to the medications, as it stopped while I was still taking them. It may have been something to do with the loss of nutrients or something after a bad bout of bleeding. I should add that I was diagnosed with UC while in hospital, so I had only been taking Mesasal for a short amount of time. Good luck, I hope you find out what the cause is! When I was complaining about my hair loss to my doctor, he pointed to his almost bald head and said "don’t worry, it won’t get to this stage". Amy. Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Nope, luckily I haven’t had any bleeding in over 5 years now.  I haven’t had a flare of my UC in all that time, the meds seem to be keeping my in remision (along with trying to stay healthy, eat right, exercise).  I know that when you are bleeding you can become anemic, which can then cause hair loss.  But for me I guess I am wondering if it can just be the meds, since I haven’t been sick in so long. Nikki – Hide quoted text — Show quoted text – I has hair loss from the asacol but got deathly sick and got changed to Pentasa where I still am loosing hair but no bald spots, knock on wood.  Are you bleeding at all?  I had a lot of hair loss when I was bleeding and had to keep having transfusion.  UM MOM Susan Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Nikki when was your last blood tests done for mal absorptions and blood counts and so forth?  Maybe this needs to be done to see if it is the meds or something else.  UM MOM Susan

Nope, luckily I haven’t had any bleeding in over 5 years now.  I haven’t had a flare of my UC in all that time, the meds seem to be keeping my in remision (along with trying to stay healthy, eat right, exercise).  I know that when you are bleeding you can become anemic, which can then cause hair loss.  But for me I guess I am wondering if it can just be the meds, since I haven’t been sick in so long. Nikki

– Hide quoted text — Show quoted text – I has hair loss from the asacol but got deathly sick and got changed to Pentasa where I still am loosing hair but no bald spots, knock on wood. Are you bleeding at all?  I had a lot of hair loss when I was bleeding and had to keep having transfusion.  UM MOM Susan Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Oh boy – I know exactly what you mean about knowing you’ll be bald.  I thought my hair loss was from Asacol but after going off it, I continued to lose hair for over 3 months.  So I realized it wasn’t from the Asacol.  My doctor thinks it’s from the operation I had in February and from all the stress I had in my life. My hair finally quit falling out after about 6 months.  I lost so much hair!!  Now that it’s growing back in, I have all these short hairs sticking up all over – they look so messy but I don’t care because at least they’re growing. I have went on and off Asacol 3 times now.  I lost hair the second time I went on it but not the first time.  And like I said – this last time I don’t think it was the Asacol since my hair continued to fall out after going off it.  It was very weird when it quit falling out – one day it was still coming out in major amounts and the next day it just stopped.  I hope you find out what it is that’s making it fall out – I really know how you feel! ~~~~Pat CD Class of 98 – Hide quoted text — Show quoted text -"Nikki" wrote Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Nikki,  I lost hair while on 6mp but, after I got use to the dose the hair lose stopped and the hair grew back.  When I was at my sickest with CD (right before getting dx’d) I lost a lot of hair.    I think that the hair lose can be from us not getting the right vitamins for our bodies. — Take Care, Sherry  :o) (To reply remove nospam from addie.)

– Hide quoted text — Show quoted text – Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

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Response:

Pat I found with the asacol even after I had to stop taking it my hair was still falling out for a few months.  Now with the pentasa it’s falling out in strands not clumps.  UM MOM Susan

– Hide quoted text — Show quoted text – Oh boy – I know exactly what you mean about knowing you’ll be bald.  I thought my hair loss was from Asacol but after going off it, I continued to lose hair for over 3 months.  So I realized it wasn’t from the Asacol.  My doctor thinks it’s from the operation I had in February and from all the stress I had in my life. My hair finally quit falling out after about 6 months.  I lost so much hair!!  Now that it’s growing back in, I have all these short hairs sticking up all over – they look so messy but I don’t care because at least they’re growing. I have went on and off Asacol 3 times now.  I lost hair the second time I went on it but not the first time.  And like I said – this last time I don’t think it was the Asacol since my hair continued to fall out after going off it.  It was very weird when it quit falling out – one day it was still coming out in major amounts and the next day it just stopped.  I hope you find out what it is that’s making it fall out – I really know how you feel! ~~~~Pat CD Class of 98 "Nikki" wrote Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

I has hair loss from the asacol but got deathly sick and got changed to Pentasa where I still am loosing hair but no bald spots, knock on wood.  Are you bleeding at all?  I had a lot of hair loss when I was bleeding and had to keep having transfusion.  UM MOM Susan

– Hide quoted text — Show quoted text – Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Hi, I know that hair loss can be associated with any of the mesalamine meds (Pentasa, Asacol) but was wondering what people’s experiences were.  I have been on one of these meds for the past 5 years – Asacol until last year (maintenance doses, haven’t had a UC flare in all that time – yay!). Then my hair starting falling out, alot.  No doctors could figure out why. So I switched to Pentasa.  Now a year later, having more hair loss than before.  Doctors still can’t figure out why, after blood tests and everything.  Last year I tried switching to a 6mp medicine (although now I just can’t remember the name of it), and it lowered my blood cell count too much, so I had to get off of it. I am wondering, with any of you that experienced hair loss from either of these meds, did it happen after you had been taking them for so long (with no problems before)?  And how much did you lose? Mine is VERY excessive, to the point where I am positive I will have bald spots soon, lost about 3/4 of my hair (luckily it was VERY thick before, but it is very thin now, and still going…).  I’ve heard of Colazol, although it is also a mezalamine-based drug, has anybody tried this?  Not even sure if the Asacol/Pentasa are what is making my hair fall out, but I am getting desparate and want to try anything and everything I can! The doctor’s are of no help. Thanks for any help! Nikki

Response:

Question:

yA BUT YOUR TALKING JUST ONE NUTRIENT…Nutrients work in Synergy.WHAT ABOUT Essential fatty acids, Rutin, Lutein, quercitin, Hesperidin, Green tea extract, Bilberry Extract, not to mention Vitamin C and E.  And not only that they are great for one’s cells.  They will improve your health! And we should be taking them…sick or not. 5 to 7 servings of veges and fruits everyday will cut your cancer risk in half. Ken.W  7 Years Med Free

– Hide quoted text — Show quoted text – (Quick summary: The 5-ASA drugs reduce cancer risk in UC by 81 percent. KEN–By comparison, a very similar study showed that a nutritional supplement, folic acid, reduced cancer risk in UC by only 28 percent. (see Lashner BA et al.: "The effect of folic acid supplementation on the risk for cancer or dysplasia in ulcerative colitis," Gastroenterology 1997, 112:29-32. ******* Aliment Pharmacol Ther 2000 Feb;14(2):145-53 Colorectal cancer prevention in ulcerative colitis: a case-control study. Eaden J, Abrams K, Ekbom A, Jackson E, Mayberry J. The Gastrointestinal Research Unit, Leicester General Hospital, Leicester, UK. BACKGROUND: The risk of colorectal cancer (CRC) in ulcerative colitis (UC) increases with extent and duration of disease. Identifying other risk factors would allow targeting of sub-groups at greatest risk, enabling more cost-effective surveillance. METHODS: We conducted a case-control study  comparing 102 cases of CRC in UC with matched controls. Odds ratios (OR) for cancer risk were estimated by conditional logistic regression. A multivariate model assessed the contribution of individual variables. RESULTS: Regular 5-aminosalicylic acid (5-ASA) therapy reduces cancer risk by 75% (OR 0.25, 95% CI: 0.13-0.48, P < 0.00001). Adjusting for other variables, ***taking mesalazine [e.g., Pentasa, Asacol, Colazal] regularly reduces risk by 81%*** (OR 0.19, 95% CI: 0.06-0.61, P=0.006) and visiting a hospital doctor more than twice a year also reduces risk (OR 0.16, 95% CI: 0.04-0.60, P=0.007). Considering variables independently, having a family history of sporadic CRC in any relative increases risk fivefold (OR 5.0, 95% CI: 1.10-22.82, P < 0.04). CONCLUSIONS: CRC risk among UC patients can be reduced by regular therapy with 5-ASA medication. Colonoscopic surveillance may be best targeted on those unable to take 5-ASAs (e.g. due to allergy) and those with a positive family history of CRC.

Response:

Thanks for an interesting article — my doc has me on folic acid but I may discuss going back on a 5-ASA drug just for the prevention. Rebecca

– Hide quoted text — Show quoted text – (Quick summary: The 5-ASA drugs reduce cancer risk in UC by 81 percent. KEN–By comparison, a very similar study showed that a nutritional supplement, folic acid, reduced cancer risk in UC by only 28 percent. (see Lashner BA et al.: "The effect of folic acid supplementation on the risk for cancer or dysplasia in ulcerative colitis," Gastroenterology 1997, 112:29-32. ******* Aliment Pharmacol Ther 2000 Feb;14(2):145-53 Colorectal cancer prevention in ulcerative colitis: a case-control study. Eaden J, Abrams K, Ekbom A, Jackson E, Mayberry J. The Gastrointestinal Research Unit, Leicester General Hospital, Leicester, UK. BACKGROUND: The risk of colorectal cancer (CRC) in ulcerative colitis (UC) increases with extent and duration of disease. Identifying other risk factors would allow targeting of sub-groups at greatest risk, enabling more cost-effective surveillance. METHODS: We conducted a case-control study  comparing 102 cases of CRC in UC with matched controls. Odds ratios (OR) for cancer risk were estimated by conditional logistic regression. A multivariate model assessed the contribution of individual variables. RESULTS: Regular 5-aminosalicylic acid (5-ASA) therapy reduces cancer risk by 75% (OR 0.25, 95% CI: 0.13-0.48, P < 0.00001). Adjusting for other variables, ***taking mesalazine [e.g., Pentasa, Asacol, Colazal] regularly reduces risk by 81%*** (OR 0.19, 95% CI: 0.06-0.61, P=0.006) and visiting a hospital doctor more than twice a year also reduces risk (OR 0.16, 95% CI: 0.04-0.60, P=0.007). Considering variables independently, having a family history of sporadic CRC in any relative increases risk fivefold (OR 5.0, 95% CI: 1.10-22.82, P < 0.04). CONCLUSIONS: CRC risk among UC patients can be reduced by regular therapy with 5-ASA medication. Colonoscopic surveillance may be best targeted on those unable to take 5-ASAs (e.g. due to allergy) and those with a positive family history of CRC.

Response:

(Quick summary: The 5-ASA drugs reduce cancer risk in UC by 81 percent. KEN–By comparison, a very similar study showed that a nutritional supplement, folic acid, reduced cancer risk in UC by only 28 percent. (see Lashner BA et al.: "The effect of folic acid supplementation on the risk for cancer or dysplasia in ulcerative colitis," Gastroenterology 1997, 112:29-32. ******* Aliment Pharmacol Ther 2000 Feb;14(2):145-53 Colorectal cancer prevention in ulcerative colitis: a case-control study. Eaden J, Abrams K, Ekbom A, Jackson E, Mayberry J. The Gastrointestinal Research Unit, Leicester General Hospital, Leicester, UK. BACKGROUND: The risk of colorectal cancer (CRC) in ulcerative colitis (UC) increases with extent and duration of disease. Identifying other risk factors would allow targeting of sub-groups at greatest risk, enabling more cost-effective surveillance. METHODS: We conducted a case-control study  comparing 102 cases of CRC in UC with matched controls. Odds ratios (OR) for cancer risk were estimated by conditional logistic regression. A multivariate model assessed the contribution of individual variables. RESULTS: Regular 5-aminosalicylic acid (5-ASA) therapy reduces cancer risk by 75% (OR 0.25, 95% CI: 0.13-0.48, P < 0.00001). Adjusting for other variables, ***taking mesalazine [e.g., Pentasa, Asacol, Colazal] regularly reduces risk by 81%*** (OR 0.19, 95% CI: 0.06-0.61, P=0.006) and visiting a hospital doctor more than twice a year also reduces risk (OR 0.16, 95% CI: 0.04-0.60, P=0.007). Considering variables independently, having a family history of sporadic CRC in any relative increases risk fivefold (OR 5.0, 95% CI: 1.10-22.82, P < 0.04). CONCLUSIONS: CRC risk among UC patients can be reduced by regular therapy with 5-ASA medication. Colonoscopic surveillance may be best targeted on those unable to take 5-ASAs (e.g. due to allergy) and those with a positive family history of CRC.

Response:

Question:

Hey Alan, long time no see. How’s everything with you. Good I hope. Mike – Hide quoted text — Show quoted text – This very recent study shows RMAT achieving a 50 percent success rate (6/12 patients) for inducing remission and a 25 percent success rate for maintaining remission (3 of those 6). These results are roughly equivalent to those for Pentasa/Asacol, and less than those for 6-mp/Imuran. I beg to differ. Read the abstract *in detail*. The devil, as always, is in the *detail*. The most important sentences you have overlooked were these: PATIENTS: A series of 12 patients (7 male, 5 female; aged 15-42 years) with severe, obstructive or penetrating Crohn’s disease were recruited. Pentasa and Asacol will have litte to no effect on prople with *severe* CD. Those drugs are only useful in people with *mild* to *moderate* CD. METHODS: Patients failing maximal therapy The means that all other "traditional" CD treatments had *failed* for these patients. I’ve met the patients that Dr. Borody treats. He ends up treating the patients that all other Gastroenterologists have given up on. In short, he gets to see patients who are in a terrible state, that conservative CD treatment has failed. The likelihood of Pentasa or Asacol making even the slightest of improvement in the condition of these patients is, in my opinion, extemely low. Comparing 5-ASA treatment of mild to moderate CD with RMAT treatment of severe CD "failing maximal therapy" is comparing apples to oranges. Alan. CD, class of 1979.

Please Visit www.ibdcure.com and sign the petition for an IBD postage stamp. All opinions expressed are mine unless otherwise noted. "those that can be offended, will be" … Pastor Don

Response:

This very recent study shows RMAT achieving a 50 percent success rate (6/12 patients) for inducing remission and a 25 percent success rate for maintaining remission (3 of those 6). These results are roughly equivalent to those for Pentasa/Asacol, and less than those for 6-mp/Imuran.

I beg to differ. Read the abstract *in detail*. The devil, as always, is in the *detail*. The most important sentences you have overlooked were these: PATIENTS: A series of 12 patients (7 male, 5 female; aged 15-42 years) with severe, obstructive or penetrating Crohn’s disease were recruited.

Pentasa and Asacol will have litte to no effect on prople with *severe* CD. Those drugs are only useful in people with *mild* to *moderate* CD. METHODS: Patients failing maximal therapy

The means that all other "traditional" CD treatments had *failed* for these patients. I’ve met the patients that Dr. Borody treats. He ends up treating the patients that all other Gastroenterologists have given up on. In short, he gets to see patients who are in a terrible state, that conservative CD treatment has failed. The likelihood of Pentasa or Asacol making even the slightest of improvement in the condition of these patients is, in my opinion, extemely low. Comparing 5-ASA treatment of mild to moderate CD with RMAT treatment of severe CD "failing maximal therapy" is comparing apples to oranges. Alan. CD, class of 1979.

Response:

He will find some way to dismiss that study. Mike – Hide quoted text — Show quoted text – Double blind study on it’s way. http://www.acca.net.au/Public/research/antibio_mar2002.htm Just wait for the results. Noella This very recent study shows RMAT achieving a 50 percent success rate (6/12 patients) for inducing remission and a 25 percent success rate for maintaining remission (3 of those 6). These results are roughly equivalent to those for Pentasa/Asacol, and less than those for 6-mp/Imuran. Again, this is yet another un-controlled, un-blinded, un-randomized study. Generally when blinding, controlling, and randomization are added, success rates come out lower. Also, note that the researchers did not conduct small-bowel follow-throughs, so there is no way of knowing whether the "complete responders" did in fact have small bowel disease activity that had not yet become symptomatic. A major design flaw, considering 80 percent of Crohn’s cases involve the small bowel. Dig Liver Dis 2002 Jan;34(1):29-38 Treatment of severe Crohn’s disease using antimycobacterial triple therapy–approaching a cure? Borody TJ, Leis S, Warren EF, Surace R. AIM: To report long-term observations in patients with severe Crohn’s disease treated with triple macrolide-based antimycobacterial therapy. PATIENTS: A series of 12 patients (7 male, 5 female; aged 15-42 years) with severe, obstructive or penetrating Crohn’s disease were recruited. METHODS: Patients failing maximal therapy were commenced prospectively on a combination of rifabutin (450 mg/d), clarithromycin (750 mg/d) and clofazimine (2 mg/kg/d).  Progress was monitored through colonoscopy, histology, clinical response and   Harvey-Bradshaw activity index. RESULTS: Follow-up data were available for up to 54 months of therapy Six out of 12 patients experienced a full response to the antiMycobacterium avium subspecies paratuberculosis combination achieving complete clinical, colonoscopic and histologic remission of Crohn’s disease. Four of these patients were able to cease treatment after 24-46 months, 3 of whom  remained in total remission without treatment for up to 26 months and one patient relapsed after six months off treatment. A partial response to the  anti-Mycobacterium avium subspecies paratuberculosis combination was seen in 2 patients showing complete clinical remission with mild histologic inflammation. Return to normal of terminal ileal strictures occurred in 5 patients. Harvey-Bradshaw activity index in patients showing a full or partial response to therapy fell from an initial 13.4 +/- 1. 91 to 0. 5 +/- 0. 47 [n = 8, p < 0. 001) after 52-54 months. CONCLUSIONS: Reversal of severe Crohn’s disease has been  achieved in 6/12 patients using prolonged combination anti-Mycobacterium avium  subspecies paratuberculosis therapy alone. Three patients remain in long-term remission with no detectable Crohn’s disease off all therapy These results support a causal role for Mycobacterium avium subspecies paratuberculosis in  Crohn’s disease while also suggesting that a cure may become possible.

Please Visit www.ibdcure.com and sign the petition for an IBD postage stamp. All opinions expressed are mine unless otherwise noted. "those that can be offended, will be" … Pastor Don

Response:

Double blind study on it’s way. http://www.acca.net.au/Public/research/antibio_mar2002.htm Just wait for the results. Noella – Hide quoted text — Show quoted text – This very recent study shows RMAT achieving a 50 percent success rate (6/12 patients) for inducing remission and a 25 percent success rate for maintaining remission (3 of those 6). These results are roughly equivalent to those for Pentasa/Asacol, and less than those for 6-mp/Imuran. Again, this is yet another un-controlled, un-blinded, un-randomized study. Generally when blinding, controlling, and randomization are added, success rates come out lower. Also, note that the researchers did not conduct small-bowel follow-throughs, so there is no way of knowing whether the "complete responders" did in fact have small bowel disease activity that had not yet become symptomatic. A major design flaw, considering 80 percent of Crohn’s cases involve the small bowel. Dig Liver Dis 2002 Jan;34(1):29-38 Treatment of severe Crohn’s disease using antimycobacterial triple therapy–approaching a cure? Borody TJ, Leis S, Warren EF, Surace R. AIM: To report long-term observations in patients with severe Crohn’s disease treated with triple macrolide-based antimycobacterial therapy. PATIENTS: A series of 12 patients (7 male, 5 female; aged 15-42 years) with severe, obstructive or penetrating Crohn’s disease were recruited. METHODS: Patients failing maximal therapy were commenced prospectively on a combination of rifabutin (450 mg/d), clarithromycin (750 mg/d) and clofazimine (2 mg/kg/d).  Progress was monitored through colonoscopy, histology, clinical response and   Harvey-Bradshaw activity index. RESULTS: Follow-up data were available for up to 54 months of therapy Six out of 12 patients experienced a full response to the antiMycobacterium avium subspecies paratuberculosis combination achieving complete clinical, colonoscopic and histologic remission of Crohn’s disease. Four of these patients were able to cease treatment after 24-46 months, 3 of whom  remained in total remission without treatment for up to 26 months and one patient relapsed after six months off treatment. A partial response to the  anti-Mycobacterium avium subspecies paratuberculosis combination was seen in 2 patients showing complete clinical remission with mild histologic inflammation. Return to normal of terminal ileal strictures occurred in 5 patients. Harvey-Bradshaw activity index in patients showing a full or partial response to therapy fell from an initial 13.4 +/- 1. 91 to 0. 5 +/- 0. 47 [n = 8, p < 0. 001) after 52-54 months. CONCLUSIONS: Reversal of severe Crohn’s disease has been  achieved in 6/12 patients using prolonged combination anti-Mycobacterium avium  subspecies paratuberculosis therapy alone. Three patients remain in long-term remission with no detectable Crohn’s disease off all therapy These results support a causal role for Mycobacterium avium subspecies paratuberculosis in  Crohn’s disease while also suggesting that a cure may become possible.

Response:

This very recent study shows RMAT achieving a 50 percent success rate (6/12 patients) for inducing remission and a 25 percent success rate for maintaining remission (3 of those 6). These results are roughly equivalent to those for Pentasa/Asacol, and less than those for 6-mp/Imuran. Again, this is yet another un-controlled, un-blinded, un-randomized study. Generally when blinding, controlling, and randomization are added, success rates come out lower. Also, note that the researchers did not conduct small-bowel follow-throughs, so there is no way of knowing whether the "complete responders" did in fact have small bowel disease activity that had not yet become symptomatic. A major design flaw, considering 80 percent of Crohn’s cases involve the small bowel. Dig Liver Dis 2002 Jan;34(1):29-38 Treatment of severe Crohn’s disease using antimycobacterial triple therapy–approaching a cure? Borody TJ, Leis S, Warren EF, Surace R. AIM: To report long-term observations in patients with severe Crohn’s disease treated with triple macrolide-based antimycobacterial therapy. PATIENTS: A series of 12 patients (7 male, 5 female; aged 15-42 years) with severe, obstructive or penetrating Crohn’s disease were recruited. METHODS: Patients failing maximal therapy were commenced prospectively on a combination of rifabutin (450 mg/d), clarithromycin (750 mg/d) and clofazimine (2 mg/kg/d).  Progress was monitored through colonoscopy, histology, clinical response and   Harvey-Bradshaw activity index. RESULTS: Follow-up data were available for up to 54 months of therapy Six out of 12 patients experienced a full response to the antiMycobacterium avium subspecies paratuberculosis combination achieving complete clinical, colonoscopic and histologic remission of Crohn’s disease. Four of these patients were able to cease treatment after 24-46 months, 3 of whom  remained in total remission without treatment for up to 26 months and one patient relapsed after six months off treatment. A partial response to the  anti-Mycobacterium avium subspecies paratuberculosis combination was seen in 2 patients showing complete clinical remission with mild histologic inflammation. Return to normal of terminal ileal strictures occurred in 5 patients. Harvey-Bradshaw activity index in patients showing a full or partial response to therapy fell from an initial 13.4 +/- 1. 91 to 0. 5 +/- 0. 47 [n = 8, p < 0. 001) after 52-54 months. CONCLUSIONS: Reversal of severe Crohn’s disease has been  achieved in 6/12 patients using prolonged combination anti-Mycobacterium avium  subspecies paratuberculosis therapy alone. Three patients remain in long-term remission with no detectable Crohn’s disease off all therapy These results support a causal role for Mycobacterium avium subspecies paratuberculosis in  Crohn’s disease while also suggesting that a cure may become possible.

Response:

Question:

I take Centrum Forte as well as calcium……am waiting for an appt with the rheumatologist to decide which "bone" drug to put me on…..however, the wait is 8 months……I’ll see the doc in April, and I have already been diagnosed with osteoporosis…..when I was 34…..3 years ago….

In those with crohns .. vitamin K / phylloquinone is depleted and it is the bone density .. essential .. It is also depleted in those with long term antibiotic usage. Who loves ya. Tom – Hide quoted text — Show quoted text – Donna Thanks for all the advice…….it is appreciated….. Donna, I hope you are on calcium, vitamin D and perhaps Fosamax or other form of the drug to protect your bones. Also vitamin K which is one of the vitamins commonly found lacking in those with Crohns .. phylloquinone .. Bone builder .. Who loves ya. Tom — Pearl L Hi John I tried Entocort and it didn’t help me at all…..I could be the exception here, I don’t know. I am on prednisone for life (doc says)……we are currently trying to get my dose as low as possible (and still keep my Crohn’s under control) in order to decrease the damage to the rest of my organs.  I am told that all my organs will eventually be damaged, so they are keeping a close eye on me. When I tried the Entocort, I was very ill….maybe too ill for it to help me…..that’s when I started eating the prednisone… I wish you wellness….. Donna 1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John — Jesus was a Vegetarian! http://www.nucleus.com/watchman Moses was a Mystic! http://www.nucleus.com/watchman/light.html

– Jesus was a Vegetarian! http://www.nucleus.com/watchman Moses was a Mystic! http://www.nucleus.com/watchman/light.html

Response:

I take Centrum Forte as well as calcium……am waiting for an appt with the rheumatologist to decide which "bone" drug to put me on…..however, the wait is 8 months……I’ll see the doc in April, and I have already been diagnosed with osteoporosis…..when I was 34…..3 years ago…. Donna Thanks for all the advice…….it is appreciated…..

– Hide quoted text — Show quoted text – Donna, I hope you are on calcium, vitamin D and perhaps Fosamax or other form of the drug to protect your bones. Also vitamin K which is one of the vitamins commonly found lacking in those with Crohns .. phylloquinone .. Bone builder .. Who loves ya. Tom — Pearl L Hi John I tried Entocort and it didn’t help me at all…..I could be the exception here, I don’t know. I am on prednisone for life (doc says)……we are currently trying to get my dose as low as possible (and still keep my Crohn’s under control) in order to decrease the damage to the rest of my organs.  I am told that all my organs will eventually be damaged, so they are keeping a close eye on me. When I tried the Entocort, I was very ill….maybe too ill for it to help me…..that’s when I started eating the prednisone… I wish you wellness….. Donna 1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John — Jesus was a Vegetarian! http://www.nucleus.com/watchman Moses was a Mystic! http://www.nucleus.com/watchman/light.html

Response:

Donna, I hope you are on calcium, vitamin D and perhaps Fosamax or other form of the drug to protect your bones.

Also vitamin K which is one of the vitamins commonly found lacking in those with Crohns .. phylloquinone .. Bone builder .. Who loves ya. Tom – Hide quoted text — Show quoted text – — Pearl L Hi John I tried Entocort and it didn’t help me at all…..I could be the exception here, I don’t know. I am on prednisone for life (doc says)……we are currently trying to get my dose as low as possible (and still keep my Crohn’s under control) in order to decrease the damage to the rest of my organs.  I am told that all my organs will eventually be damaged, so they are keeping a close eye on me. When I tried the Entocort, I was very ill….maybe too ill for it to help me…..that’s when I started eating the prednisone… I wish you wellness….. Donna 1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John

– Jesus was a Vegetarian! http://www.nucleus.com/watchman Moses was a Mystic! http://www.nucleus.com/watchman/light.html

Response:

John- 1) The highest dosage of pred I have been on  was 60 mg a day.  I was weaned off by 5mg per week increments until I hit approx 20 mg and then I would alternate every other day.  The slower I weaned the better.  This flare I started at 50mg.  Now I am at 45.  Your situation sounds pretty  normal. 2)  It always takes me a couple of weeks to notice improvement, but everyone is different.  I think it also depends on how many times you have used the pred. before.  It also is very individual how long it takes for side effects (like moon face, etc) to show up.  I notice that each time I go back on pred, the side effects appear more quickly. 3)  I haven’t yet tried Entocort.  My doc wanted to try me on it, but we couldn’t get it from pharmacies in time, so we went the pred route.  I’m sure someone else here can help you with that. 4)  I was prednisone dependent back in 1999 and that is one reason I had a laparascopic resection for my crohn’s.  It was the only way I could get off of the drug.  Prednisone is not a drug you want to remain on for any length of time. 5 & 6)  Can’t help you with the j-pouch or colostomy bag, but I’m sure someone else here can. Good luck! Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

hi john, i hope my experience helps a little.  not a doc here, okay, just someone that has hung around cd for about 3 years but only recently got it confirmed… i would consider 40mg/day pred. fairly high for our condition.  others might say medium.  i know of some people with other immune problems that take 120/mg day….so i guess it depends on your perspective. everyone is different, 2 days to 2 weeks, prolly not out of the norm…. depends on the condition, the amount of pred and the individual. i have heard that entocort will help keep you in remission.  i am not on it, nor have i ever taken it. i am not on pred for life, i have heard of some that have been, it really takes it’s toll. 5 and 6 i can’t comment on, but there are others here that can. glad to see you found us, and a welcome to you my fellow neighbor. jeff, cd class of o1

– Hide quoted text — Show quoted text – 1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John

Response:

Hi John I tried Entocort and it didn’t help me at all…..I could be the exception here, I don’t know. I am on prednisone for life (doc says)……we are currently trying to get my dose as low as possible (and still keep my Crohn’s under control) in order to decrease the damage to the rest of my organs.  I am told that all my organs will eventually be damaged, so they are keeping a close eye on me. When I tried the Entocort, I was very ill….maybe too ill for it to help me…..that’s when I started eating the prednisone… I wish you wellness….. Donna

– Hide quoted text — Show quoted text – 1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John

Response:

Donna, I hope you are on calcium, vitamin D and perhaps Fosamax or other form of the drug to protect your bones. — Pearl L

– Hide quoted text — Show quoted text – Hi John I tried Entocort and it didn’t help me at all…..I could be the exception here, I don’t know. I am on prednisone for life (doc says)……we are currently trying to get my dose as low as possible (and still keep my Crohn’s under control) in order to decrease the damage to the rest of my organs.  I am told that all my organs will eventually be damaged, so they are keeping a close eye on me. When I tried the Entocort, I was very ill….maybe too ill for it to help me…..that’s when I started eating the prednisone… I wish you wellness….. Donna 1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John

Response:

1. What is a medium dose? A high dose? I was on 40 mg/day and tapering 5mg/day/week. Does that sound like a typical run? 2. It took 2 weeks before any improvement was noted. Does that sound typical? I had heard that improvement usually comes in a day or two. 3. I’m taking Entocort now as well as 20 mg pred.  Has anyone experienced good results with entocort? I gather it is stronger stuff than pentasa/asacol/salofalk. Does anyone need Entocort to stay in remission? 4. Doc said he’d recommend surgery before putting me on pred for life (if it every got that stubborn). Anyone out there on pred for life? 5. With a J-pouch are the stools well formed as they are before one gets UC? Do you just have to go to the bathroom more often? 6. Same question as above but regarding colostomy bag. Thanks a million……well, I’m Canadian, so for all the Americans, thanks a 500,000  ;-) John

Response:

Question:

Thanks for info.,as for generic,I am taking Asacol 400,the real thing!I know it takes weeks for Asacol to start being effective.I wonder how long it takes to get out of your system, as its been 4 days and Im still getting hives!I thought 48 hours?I am going to ask my doc about colozal! Thanks Debbie

Response:

: Does anyone know exactly what does Asacol do? I take 3 – 400mgs 3x per day. I know : it’s supposed to be an anti-inflammatory but am curious to know more about the : actual physiology behind it. : thanks, : Jeff As far as I know, they aren’t exactly sure how the anti-inflammatory response is obtained using 5-ASA type drugs, it just works.   Samuel Ferrier CD Class of ‘97                             Ileostomate since ‘99 http://users.bigpond.net.au/sferrier

Response:

I wonder how long it takes to get out of your system, as its been 4 days and Im still getting hives!I thought 48 hours?

I dont know what the half life of Asacol is but I would think it should be out of your system by now. Are you taking antihistimines to get rid of the hives?   <<I am going to ask my doc about colozal! Thanks Debbie Hmm, I wonder if this drug would be less likely to cause an allergic reaction since its not absorbed systemically? I dont know… I guess its worth asking about. I’m calling mine today about Colazal. Had another blistering headache yesterday for Mothers Day. I think the fact that its not absorbed will definitely help this nasty side effect. Its worth a shot! Stay well!

Response:

How expensive is it?  I am curious because I live in the US but very close to Canada.  I experience severe side effects from pred so an alternative would be great….. Debbe

Response:

I had a severe headache for Mothers Day also! I am taking antihistimines to control the hives! Benedryl is more effective then zyrtec, I think because it takes Zyrtec longer to start working fully! I have to figure this out! Thanks Debbie

Response:

Does anyone know exactly what does Asacol do? I take 3 – 400mgs 3x per day. I know it’s supposed to be an anti-inflammatory but am curious to know more about the actual physiology behind it. thanks, Jeff – Hide quoted text — Show quoted text – It’s sulfa, not sulfur, and as someone with a sulfa allergy, UC, and an Asacol prescription, I can attest to the fact that Asacol does NOT contain sulfa. Pentasa, either, for that matter.  Rather than containing sulfasalazine, both contain mesalamine. True, true. Lots of confusion here. Pentasa, Asacol, & Colazal are all newer drugs that contain only the active metabolite of sulfasalazine, mesalamine, & not the sulfa portion that causes allergic reations in some & stomach upset in others. I’ve sifted through a few publications that I havent been keeping up with (naughty me!) & found some info on Colazal some might find interesting. This info I got from a newsletter called Pharmacists Letter. Colazal is balsalazide, a compound containing mesalamine & an inert compound & its broken down in the colon by bacteria. This is different from Pentasa & Asacol as they are mesalamine alone & rely on a delayed release absorbtion system to be released into the colon. Using this system (A&Ps) some is released before reaching the colon & absorbed systemically. Studies have shown that Colazal works as well as Asacol but its not for use in people whose colitis is located very high in the colon as it  only starts breaking down at this point. Hmm, sounds like something I’ll talk to my GI about. BFN! Linda

Response:

It’s sulfa, not sulfur, and as someone with a sulfa allergy, UC, and an Asacol prescription, I can attest to the fact that Asacol does NOT contain sulfa. Pentasa, either, for that matter.  Rather than containing sulfasalazine, both contain mesalamine.

True, true. Lots of confusion here. Pentasa, Asacol, & Colazal are all newer drugs that contain only the active metabolite of sulfasalazine, mesalamine, & not the sulfa portion that causes allergic reations in some & stomach upset in others. I’ve sifted through a few publications that I havent been keeping up with (naughty me!) & found some info on Colazal some might find interesting. This info I got from a newsletter called Pharmacists Letter. Colazal is balsalazide, a compound containing mesalamine & an inert compound & its broken down in the colon by bacteria. This is different from Pentasa & Asacol as they are mesalamine alone & rely on a delayed release absorbtion system to be released into the colon. Using this system (A&Ps) some is released before reaching the colon & absorbed systemically. Studies have shown that Colazal works as well as Asacol but its not for use in people whose colitis is located very high in the colon as it  only starts breaking down at this point. Hmm, sounds like something I’ll talk to my GI about. BFN! Linda

Response:

I didnt know there was a generic available for Asacol..Katie

Asacol is still under patent in the US. I’ve been wondering if the FDA has a site that lists the dates drugs go off patent since I’m on Asacol & have to pay 20% with my current insurance. I wonder though if mesalamine will be much cheaper once its available genericly. Less popular drugs (seems real popular *here*, huh? ) dont usually get many companies competing so the price doesnt get low too quickly. Regarding the original posters problems with the generic, I’m wondering if that person lives in a country where generic drugs are not as thoroughly tested as they are in the US? Here generic drugs are tested for therapeutic equivalency & the results are published in a book pharmacies must keep on hand. There *are* products available with the same drug as the brand but that the FDA has found to be not therapeutically equivalent. Then again there are drugs that are manufactured in the same plant as the brand name but just put in different bottles & some people have problems with these generics as well. Human nature… Linda

Response:

I had increased diarrhea with Asacol.  My GI asked me if the pharmacist was giving me the "generic" brand.

I didnt know there was a generic available for Asacol..Katie

Response:

: I believe that there are two problem areas with this group of 3 similar : meds. One is sulfa allergies, the other is aspirin allergies. They are all : similar but one lacks aspirin-like chemicals, and another lacks sulfa. I : believe asacol has both. I think that you may well be able to find a : solution, with one of the three. I believe they all aim at essentially the : same area, too. This was just off the top, I can research further, but your : doc should know. Keep up hope anyway! : Boyd Asacol lacks the sulphur component of sulphasalazine, as far as I know. That’s the main reason for its existence – a sulphur-free version of 5-ASA. Samuel Ferrier CD Class of ‘97                             Ileostomate since ‘99 http://users.bigpond.net.au/sferrier

Response:

This is not uncommon. many medications vary widely between the name brands and the generics, usually because there is much there besides the medication for which the generic was made. If at all possible try both before giving up on any medication. Boyd — "The cure for boredom is curiosity. There is no cure for curiosity." (Ellen Parr- author)

Response:

Dear Debbie, There is a new drug called "Colozal" that is like asacol except it doesn’t have any sulfur in it. That one might help you? Ask your doctor. good luck, Al

It’s sulfa, not sulfur, and as someone with a sulfa allergy, UC, and an Asacol prescription, I can attest to the fact that Asacol does NOT contain sulfa. Pentasa, either, for that matter.  Rather than containing sulfasalazine, both contain mesalamine.  Of the two, it has been my experience that Asacol is more effective. J

Response:

I had increased diarrhea with Asacol.  My GI asked me if the pharmacist was giving me the "generic" brand.  (As a result of our National Health Care, the government makes you go on the cheaper drug, even when it’s not the best for you.)  Anyway, I was on the "generic" brand, so my GI gave me a slew of samples – the "real stuff".  Not really sure what the difference is, although when you look at the generic pill with the true one, they definitely look different.  Surprisingly it made quit a difference – the generic pill actually was giving me more diarrhea than I already had Maureen

– Hide quoted text — Show quoted text – Hello,                                       I’ve been on Asacol for 10 months! For the last month I have been having hives everyday! My pred was lowered at this time also! My GI thinks that I might be allergic to Asacol, so he stopped it! If it turns out that it is the problem,I would like to hear  what have you been doing for treatment? I dread increasing my pred again! Im wondering If pensa(sp.) will cause same problems or could it be the coating? Any info is welcome! Thanks Debbie

Response:

<<There is a new drug called "Colozal" that is like asacol except it doesn’t have any sulfur in it. AFAIK Asacol doesn’t have any sulfur in it either.  Maybe you are thinking of sulphasalazine.  Asacol has the same active ingredient as that drug, but without the sulfa component.  I haven’t heard of Colozal.  Does it target the same area of the colon as Asacol? Mary Ellen

Response:

I had a problem with asacol and then tried Pentasa.  It was worse.  I got very ill. I am on budesonide which is a topical steroid.  It works for me and has no evident side effects. However, it is not yet approved here so I must buy it from Canada eg. no insurance coverage.

Response:

I believe that there are two problem areas with this group of 3 similar meds. One is sulfa allergies, the other is aspirin allergies. They are all similar but one lacks aspirin-like chemicals, and another lacks sulfa. I believe asacol has both. I think that you may well be able to find a solution, with one of the three. I believe they all aim at essentially the same area, too. This was just off the top, I can research further, but your doc should know. Keep up hope anyway! Boyd — "The cure for boredom is curiosity. There is no cure for curiosity." (Ellen Parr- author)

Response:

Hello,                                                                                                               I’ve been on Asacol for 10 months! For the last month I have been having hives everyday! My pred was lowered at this time also! My GI thinks that I might be allergic to Asacol, so he stopped it! If it turns out that it is the problem,I would like to hear  what have you been doing for treatment? I dread increasing my pred again! Im wondering If pensa(sp.) will cause same problems or could it be the coating? Any info is welcome! Thanks Debbie

Response:

Dear Debbie, There is a new drug called "Colozal" that is like asacol except it doesn’t have any sulfur in it. That one might help you? Ask your doctor. good luck, Al

Hello,                                       I’ve been on Asacol for 10 months! For the last month I have been having hives everyday! My pred was lowered at this time also! My GI thinks that I might be allergic to Asacol, so he stopped it! If it turns out that it is the problem,I would like to hear  what have you been doing for treatment? I dread increasing my pred again! Im wondering If pensa(sp.) will cause same problems or could it be the coating? Any info is welcome! Thanks Debbie

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Question:

Reading the side effects and also hearing from others in the group who have had similar problems. When I was on it, I had crystalluria and used to pee like a madman.  No doctor ever seemed to care too much, though.  It stopped, when I stopped taking the meds and my kidney tests are OK, supposedly.  The stuff poisoned me in other ways, though.  I’d rather drink mercury then take that stuff again.  I think the mercury is safer, actually, than the poison called 5-ASA. I am very sorry about your situation.  I hope you feel better.  It’s too bad you can’t sue anyone, especially considering how young you are and how they disabled you with this poison. Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address: – Hide quoted text — Show quoted text – Your guess is accurate, although I should point out for people taking this medication that it is useful for most people, just guess I am unlucky(but still breathing so all is not lost ). Was your guess as a result of experience or of reading the listed side effects of the drug ? (which were unknown at the time I was taking it). Rgds, Si. Let me guess, it was mesalamine (Pentasa/Asacol, etc…) I swear that stuff is definately poison. Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address: Hi all, I am 30 yrs old, have had an ileostomy due to UC for 8 years, whilst being treated for UC I had a reaction to one of the drugs which caused interstitial nephritis (which is a condition that can lead to kidney failure), at the time doctors were unsure whether the damage would stay the same, get worse, or improve with time. Unfortunately in my case the kidneys have started to deteriorate to a point where I need dialysis/transplant. I am posting this in case anyone else is in this position or has had to undergo Haemodialysis with an ileostomy, I would basically like to know if it makes it any more difficult to manage your fluid levels, and also if having the ileostomy reduces the level of potassium in your blood, (due to abosorption etc etc..). Is there anyone out there who has had experience of this ? Thanks in advance for any info offered Si.

Response:

Your guess is accurate, although I should point out for people taking this medication that it is useful for most people, just guess I am unlucky(but still breathing so all is not lost ). Was your guess as a result of experience or of reading the listed side effects of the drug ? (which were unknown at the time I was taking it). Rgds, Si. – Hide quoted text — Show quoted text – Let me guess, it was mesalamine (Pentasa/Asacol, etc…) I swear that stuff is definately poison. Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address: Hi all, I am 30 yrs old, have had an ileostomy due to UC for 8 years, whilst being treated for UC I had a reaction to one of the drugs which caused interstitial nephritis (which is a condition that can lead to kidney failure), at the time doctors were unsure whether the damage would stay the same, get worse, or improve with time. Unfortunately in my case the kidneys have started to deteriorate to a point where I need dialysis/transplant. I am posting this in case anyone else is in this position or has had to undergo Haemodialysis with an ileostomy, I would basically like to know if it makes it any more difficult to manage your fluid levels, and also if having the ileostomy reduces the level of potassium in your blood, (due to abosorption etc etc..). Is there anyone out there who has had experience of this ? Thanks in advance for any info offered Si.

Response:

Let me guess, it was mesalamine (Pentasa/Asacol, etc…) I swear that stuff is definately poison. Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address: – Hide quoted text — Show quoted text – Hi all, I am 30 yrs old, have had an ileostomy due to UC for 8 years, whilst being treated for UC I had a reaction to one of the drugs which caused interstitial nephritis (which is a condition that can lead to kidney failure), at the time doctors were unsure whether the damage would stay the same, get worse, or improve with time. Unfortunately in my case the kidneys have started to deteriorate to a point where I need dialysis/transplant. I am posting this in case anyone else is in this position or has had to undergo Haemodialysis with an ileostomy, I would basically like to know if it makes it any more difficult to manage your fluid levels, and also if having the ileostomy reduces the level of potassium in your blood, (due to abosorption etc etc..). Is there anyone out there who has had experience of this ? Thanks in advance for any info offered Si.

Response:

Hi all, I am 30 yrs old, have had an ileostomy due to UC for 8 years, whilst being treated for UC I had a reaction to one of the drugs which caused interstitial nephritis (which is a condition that can lead to kidney failure), at the time doctors were unsure whether the damage would stay the same, get worse, or improve with time. Unfortunately in my case the kidneys have started to deteriorate to a point where I need dialysis/transplant. I am posting this in case anyone else is in this position or has had to undergo Haemodialysis with an ileostomy, I would basically like to know if it makes it any more difficult to manage your fluid levels, and also if having the ileostomy reduces the level of potassium in your blood, (due to abosorption etc etc..). Is there anyone out there who has had experience of this ? Thanks in advance for any info offered Si.

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