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How many are allergic to 5-ASA's???

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Posted 1/7/2010 2:20 PM (GMT 0)
How did you know you did not tolerate and what do/did you take instead

that has worked??

Is diarrhea a sign of intolerance?confused

Posted 1/7/2010 2:35 PM (GMT 0)
I'm allergic to Mesalamine, but not to Colazal. Mesalamine, whether taken rectally or orally, gives me increased stools, severe cramping and bloating. In short, it makes a miserable situation much worse.
Posted 1/7/2010 2:35 PM (GMT 0)

I am one of those who cannot tolerate mesalamine medications of any kind - I tried Asacol, Lialda, Rowasa enemas, and Colazol.  Started out good - seemed to be helping the UC - THEN, I got flu-like symtoms minus the fever.  Chills, nausea, muscle pain, and UC symtoms got worse after a few days with more blood and mucous.  It took a while to convince my doctor I could not tolerate the 5 ASAs/  Seems I could tolerate small doses but not high enough to "work".

After a third scope (last one a sigmoid) in 18 months, he put me on prednisone and then 6MP.  Found I could not take high enough dose of 6MP to be therapuetic (had blood tests to find out) - sooooo, that is when he sent me to another specialist with more experience.  The new doctor weaned me off the prednisone (which I took for 5 months and it worked) and he put me on rectal steroid medication only - I used Cortifoam followed by Anusol suppository twice a day for a couple weeks and then every other day and taped down now to once a week or if I feel symptoms coming on.  NO blood - very little mucous and occasional diarrhea since August.  I do have IBS so that is affected also by what I eat (causing loose stool, etc.)

Hope this helps you some.

ElaineNY

Posted 1/7/2010 3:10 PM (GMT 0)
That is interesting about the Colazal.

When I research Colazal it seems that it is only used for short term though...is that correct?
Posted 1/7/2010 3:22 PM (GMT 0)

I am not sure how long he would have kept me on it.  The recommended doseage is like 3 tablets (750mg.) 3 times a day.  I tried one three times a day and it was ok but when increased to 3 times I kept getting sicker.  The doctor said the smaller dose would not help me so I had to stop.  I called him and told him that when the medication made me feel worse than the UC I was not taking it anymore.  Now I am a stubborn senior but willing to "try".  I know I tried for about two weeks or more and kept getting sicker.  It is supposed to work best for people like me with proctosigmoiditis - left sided.

ElaineNY

Posted 1/7/2010 3:29 PM (GMT 0)
In the US at least, Colazal is used as a maintenance medication. I've cut mine from nine a day to six because the higher dose makes my stools a bit softer than they should be.
Posted 1/7/2010 3:31 PM (GMT 0)

Hmmm!  I was never told that.  My doctor gave it to my at the worst of my flare because nothing was working. 

ElaineNY

Judy2 said...
In the US at least, Colazal is used as a maintenance medication. I've cut mine from nine a day to six because the higher dose makes my stools a bit softer than they should be.

Posted 1/7/2010 5:53 PM (GMT 0)
I've tried Lialda, Colazal and Asacol. All of them increased my D. Then they all gave me new symptoms while taking them like: INTENSE abdominal pain within 1/2 hour of taking the pills, bloody D (this was always rare for me before taking 5ASA's), fecal incontinence(!!!), joint pain. The new symptoms all went away as soon as I stopped taking the 5ASA's. When I told my GI about what was happening it's like he didn't believe me. He said not being able to tolerate 5ASA's is very rare. Leave it to me to be one of the lucky few!
Posted 1/7/2010 6:33 PM (GMT 0)
I went back to sulfasalazine just because all the other stuff seemed to increase my D.
Posted 1/7/2010 6:39 PM (GMT 0)
I'm pretty sure I have a 5-ASA intolerance, if not an allergy. I got totally ill when I was first diagnosed and my doc put me on Asacol right away. Constant nausea, vomiting, loss of appetite. I was having lots of D already so not sure whether the Asacol contributed to that, but it sure didn't help. I stopped taking it and immediately felt better.

Now I'm doing Salofalk suppositories, my doc said to take care of some urgency and pain down below. No change, but some of those other symptoms have started to come back. I don't know about muscle pain because I'm having tons of that from pred withdrawal right now too, so I can't tell what's causing what. All I know is, I've been feeling utterly lousy for the past  couple weeks, doing the suppositories, and I didn't take one last night and I feel better already. I'll wait a couple days to confirm it's more than just a blip, but I'm pretty convinced by now that I do have a sensitivity to 5-ASAs.

Posted 1/7/2010 7:03 PM (GMT 0)
AMK77 - exactly!

My doctor said same thing - rarely happens!  Sorry, doc, I am a rare case.

I am a believer in trying the rectal meds and mesalamine enemas and suppositories made me worse.  Ask about using the steroids - only very little is absorbed - worked for me!  Proctofoam is milder, Anusol suppositories, and what really helped is the Cortifoam!

Good luck!

ElaineNY

Posted 1/7/2010 7:50 PM (GMT 0)
I'm severely allergic to it...my first GI put me on Asacol, wanted me to take 4 pills 3X/day, after taking just one dose (4 pills) within the hour I broke out into a full body rash, with chills and sweats, severe headache, nausea, fever, body ache and vomitting.

Yes, I read that D can also be a sign of allergy to it (asacol).



:)

Posted 1/8/2010 1:00 AM (GMT 0)
I tried Asacol which worked for a short time few months then my body rejected it and switched to Colazal, both end up making me worse until I quit them.
Posted 1/8/2010 2:17 AM (GMT 0)
I was on Pentasa for 7 years, dosages as high as 4g a day. I had terrible stomach aches and big D with rectal Salofalk before, but Pentasa did not seem to cause that. I went off Pentasa this past summer. Recently I was put back on it but cannot tolerate it now - same symptoms as the Salofalk. BTW the Pentasa never really seemed to do much, I still flared twice and developed chronic intractable D while on it.
Posted 1/8/2010 2:23 AM (GMT 0)

Mitzo - why would you stay on a medication so long that really didn't do anything for you?  Just curious! 

ElaineNY

Posted 1/8/2010 4:29 PM (GMT 0)
Hi I don't post much here but I am in a left sided flare. I have Crohns colitis. Today I had a colonoscopy and my doctor wanted to put me on asacol and I explained that it makes me worse. So she gives me liadia instead so I looked it up and saw this post and it's basically the same thing. ***. She wouldn't listen to me and threatened to kick me out of the practice and doom and gloom about hospitalization. I've had pancolitis in the past and I can most definitely wait for 6mp to kick in which works for me very well. I told her 6 mp and remicade are basically all that works for me. She totally disregarded everything I said. I don't mean to highjack this post but I am so mad right now that she won't listen to me. I did make an appointment to see my old GI dr but can't get in for two weeks. (I had to switch in the past due to insurance but now it covers my old doc). She is an awfully young doctor so I think she is so text book. Not enough experience. Anyone else experience anything like this?
Posted 1/8/2010 4:47 PM (GMT 0)
YES!  My old gastro doc more or less told me through the NP that he could no longer treat me because he did not know what else to do and "referred" me to a doctor 200 miles away.  I assumed it was a referral and I would still be treated my the old doc according to the new doc's recommendations.  Well, Medicare really doesn't work that way - they will only pay for one specialist at a time.  I KNOW the old doc wanted to get rid of me!  I am a senior and diagnosed late in life.  This doctor, I think, was used to "typical" cases that respoind to mesalamines and go into remission, etc.  Took me trying EVERY 5 ASA's including Rowasa to get him to realize I could not take them.  He and the NP truly thought I was not willing to put up with a "few" side effects.  Sorry, but I coudl not get out of bed I was so sick and I have a mild/moderate case of

poctitis/sigmoiditis. 

Glad you can go back to your old doctor - sometimes we just have to move on and find someone who listens and understands.  Absolutely NO ONE knows our body as we do - don't let them tell you that - they are human, make mistakes, but rarely want to admit it!

ElaineNY

Posted 1/9/2010 7:23 AM (GMT 0)
5-ASA's stopped working for me, which makes me wonder how does one know whether or not they stop working when not in a flare? After all, one could be taking them for years, because they are in remission, without even knowing that they are no longer effective.

I add turmeric to many of my foods. It's anti-inflammatory and doesn't have the potential side effects that 5-ASA's have. I also drink ginger teas.

I'm hoping that my flares are purely antibiotic-related; however, I don't want to take any chances. Besides I recently had to take antibiotics for some infection or another, although I only take antibiotics when absolutely necessary. Otherwise, I'd probably be on them all the time.
Posted 1/9/2010 2:11 PM (GMT 0)
Intolerance or allergic reactions are more common then GI's believe. Many patients don't KNOW they are having bad reactions and just think that it's part of the disease (so they don't bring it up to their doc). But that is so not true in some of those cases. My GI didn't want to believe me either when I told him that I just couldn't tolerate mesalamines. I can not use any mesalamines now but I am on Colazal. I lowered my dose from 9 a day to 6 a day and noticed almost immediately that my D went away. I now have solid stool, something I haven't had in 17 YEARS. But my reactions are severe abdominal pain, increased D and nausea.
Posted 1/9/2010 2:38 PM (GMT 0)
IBDISTHE - I just answered you on your other post...... I took sulfasalazine when I was first DX, and I remember when Asacol first came out that my doctor was SO thrilled because he had so many people with sulfa allergies who were able to tolerate the Asacol. So, before assuming your daughter can't take 5ASAs, it might be helpful to check out the symptoms of sulfa allergy also......
Posted 1/9/2010 3:12 PM (GMT 0)
I stayed on Pentasa 7 years on doctor's orders and in the belief that things would be even worse if I went of it. When I look back, the "remission" periods I had with Pentasa were an illusion - I was smoking at those times, and, well, let's not get into it...
Posted 1/9/2010 3:50 PM (GMT 0)

Red - I found this - must be Colalzal is a different formulation or something you can tolerate.  I could not. I could take like 3 to 6 a day but doctor said I needed 9 a day to help and could not tolerate that much...

COLAZAL is a 5-aminosalicyclic acid (5-ASA) agent approved by FDA for the treatment of mildly to moderately active ulcerative colitis.

I only wish that 5-ASAs had worked for me!  I could have avoided the prednisone I believe.

ElaineNY

Posted 1/9/2010 4:11 PM (GMT 0)
Red(Sherry)-

You say that you are allergic to ALL mesalamines yet you are on Colazal- Isn' t that a mesalamine? I am thinking about asking my daughters GI about trying it-

My daughter had inflammation throughout several areas in her colon so they said that the enemas woulod not be helpful-
anyone have other info about that?
Posted 1/9/2010 5:00 PM (GMT 0)
I always think that if the bottom is helped by the enemas (or even suppositories) my comfort level is much greater, even if there is some inflammation higher.
Posted 1/9/2010 5:29 PM (GMT 0)
Colazal is a basalazide which is in the same classification of 5-ASA's as a mesalamine. However a Basalazide breaks down differently in the colon. It is mainly used in people that have left sided Uc since it's design is to release in that area. I honestly don't think I can tolerate Colazal either but I seem to have found my happy medium at 6 a day as opposed to 9.

As for the enema's, Uc inflammation starts in the rectum and moves upward. Enemas can treat lower end inflammation and the oral medications can treat higher up. However, if your daughter is having issues with mesalamines then Rowasa or Salofalk may not be ideal since they are liquid mesalamines. I use steroid enemas to treat my inflammation because Rowasa did nothing but make me worse.
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