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Questions about Asacol

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Crohn's Disease
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Posted 9/19/2007 3:58 PM (GMT 0)
I don't know how common this is but my GI doc is leaving the decision up to me about what medication to take for my CD. He seems pretty unwilling to commit to anything. I tried Pred and Entocort and had a reaction to both (couldn't breathe). I have asthma as well so had to get off those. He previously told me (via a phone call from his nurse) that Remicade was the only thing I could take. Now he is offering up Asacol or Imuran or Remicade. When I expressed concern about Remicade being scary to me, he said it is scary to him also.

I'm thinking of going with Asacol. I have pretty mild gut symptoms but also have joint pain, blurry vision issues, small infrequent sores on my head and fatigue days at times. Will the Asacol help these other symptoms? Does Asacol help slow the progression of the disease or is it only to alleviate symptoms? Is Asacol a sulfa drug? I previously had a reaction to Bextra (sulfa based) years ago and have now been marked for no sulfa drugs. I've read lots of info but these are the questions that don't seem clear to me.

Posted 9/19/2007 4:58 PM (GMT 0)
I don't have any answers, but just wanted to say I am sorry you GI isn't more help. why should you be the expert on this stuff? you are so new with you DX, have you talked to someone else? I think having a doc who knows his/her stuff is pretty important. does he have any patients on remicade or humira? does he have a way he usually treats patients?
you are in the right place for info and welcome! yp
Posted 9/19/2007 4:58 PM (GMT 0)
No the Asacol is a mild Crohns anti-inflammatory, so I am not so sure it will help with the other issues. I have alot of problems with my joints and it doesn't help them at all. I use it only to keep the inflammation down in my intestines. No it is not a sulfa drug, I am allergic to sulfa too. Hope that helps.
Posted 9/19/2007 4:59 PM (GMT 0)
Hi Ohana,

Asacol is a drug that is based on sulfasalazine which has two components -- sulfapyridine and mesalamine. With Asacol, Lialda, and Pentasa, the molecule has been split and only the mesalamine remains. Mesalamine is thought to be the therapeutic part, which is anti-inflammatory in nature. Asacol breaks down from the ileum downward into the colon, and is mostly topical. Pentasa breaks down higher in the tract; I'm not sure about Lialda. Which is used depends on where in the tract your CD is.

Mesalamine works well for some but not all. It's cheaper (not cheap) than Remicade, and considered safer I would think, so patients are usually put on it before trying Remicade. But it can have side effects.

I took it for eleven years and finally stopped when I decided some of the problems I was having could be caused by the drug. A few of the problems apparently were from the drug, but not all.

I'm supposed to have an allergy to sulfa, though I doubt it's a true allergy and more probably an intolerance. Anyway, I've been advised both ways. Some pharmacists advised me not to take it and others said it was okay since the sulfa is removed. I just don't know. I never really had any allergic reactions to Asacol, just side effects.

I would advise discussing that topic with your doctor and a knowledgeable pharmacist.

It's interesting to me that you have asthma and can't tolerate Entocort since it's the same steroid that's used in some asthma inhalers -- budesonide. My daughter has asthma and recently had to change inhalers due to a reaction, though we're not sure if it's the drug or the propellant. So anything is possible.
Posted 9/19/2007 7:30 PM (GMT 0)
I would prescribe you a new doctor!  Yours sounds like a pretty bad one.

Posted 9/19/2007 8:12 PM (GMT 0)
One person's bad doctor is another person's good doctor.  I, personally, love a doctor who gives me my options and lets me make the final decision in my treatment.  Others need a doctor who tells them what they should do, step by step.  It's all about our own perception sometimes I think. 

The traditional route is to start with the Asacol, then move to the Imuran if needed, then go for the Remicade if the others don't work.  Some doctors go straight for the big guns, like remicade.  That would scare me too.  I would certainly want to try the lesser of all evils first.

But, he's giving you the choice, so do your research and see what you think is best for you.  Then take back what you have learned and talk to him about it.

Posted 9/19/2007 8:42 PM (GMT 0)
I have a sulfa allergy and am fine taking the asacol. The only major side effect I have noticed from it is hair thinning, but no one else seems to notice. You can take biotin (its B7 I believe) to try and reduce the hair loss. I just started taking the biotin to help with it but haven't noticed anything yet.

Also, according to my GI and I think he's right, some people take 400 three times a day, 800 three times a day, and even 1200 four times a day... he says some people actually get diarrhea on the 4 pills (1200mg) four times a day, so you have to find the therapeutic dose for yourself. He tried upping me to the 1200 4 times a day and I did have more gas and diarrhea, but I seem "ok" on 800 three times a day.

good luck.
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