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How to tell when the 5-ASA meds stop working

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Ulcerative Colitis
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Posted 10/19/2007 3:33 PM (GMT 0)
My daughter has not progressed well enough on prednisone so the doctor thinks she may be having adverse effects to the asacol and rowasa. She has been off them for 3 days. If she was not responding to the 5-ASAs, should she see a positive change by now? If not, when? I don't think there has been much of a change in her morning bathroom routine. If anything, the prednisone is giving her all the bad side effects this time. How do you tell which medicine is doing what? Arrrggghhh!!
Posted 10/19/2007 5:18 PM (GMT 0)
Is Bratcat being treated by a gastroenterologist who subspecializes in IBD? That is the only type of doctor I would trust to administer combo meds. It used to be that with severe flares one started out on steroids & then tapered down in time & eased gradually onto 5-ASA meds for maintenance. I know that combo-think with regard to IBD meds has become prevalent in recent yrs, but not all doctors know enough about their individual potential for side effects, let alone what problems they may cause when taken in tandem. I would say that if Bratcat does not improve on Pred alone within 7 days, contact her doctor. My past experience with steroid treatment of UC is that relief of symptoms (bleeding, no. of bms) came fast, pain in side took longer to go away, & I needed a huge amount of rest, i.e., lying down flat on my back-- to really recover from the flare. (Also a diet free of known irritants such as spices, fatty meats, & roughage.) My best wishes to you & Bratcat in this trying situation-- / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Posted 10/19/2007 5:36 PM (GMT 0)

Thanks OldHat, yes, her GI is very up on IBD. He seems very knowledgeable about newer things that come out and alternatives (and can be open to them). He also does not like to push for stronger drugs unless absolutely necessary.

I'm just not sure bratcat is really having an adverse reaction to the 5-ASA meds. (Or am I just not wanting to admit that she needs to go to a stronger drug?) She was doing fine on them until she went too low on the rowasa (at least that is what seems the case).

She still has to go to the bathroom alot in the morning (5-10 times). Then it tires her out and then it gets too late to get to school. (She did go today for the last 1-1/2 hours! And she is supposed to be staying for Jazz Ensemble! yeah )

I am also concerned because I don't see a really great change with the prednisone by now. She still goes alot, still has some blood, still has urgency in the am. And this is after more than 2 weeks.

I did call the doctors office and am waiting to hear back. I'll keep you posted.

Posted 10/19/2007 5:38 PM (GMT 0)
My GI once said that 5-ASA's can remain your system for a few weeks. So if she is having a sensitivity to them then it might take a while before you can really see the difference. It does get confusing because we take so many meds that even we are not sure what is helping what. I know, at least for me, that I need all 3 of my meds because at one time or another I have tried stopping them one at a time (except the 6mp) and I would quickly have an increase of symptoms. Is she going to be on pred while starting 6mp? Is she starting this?
Posted 10/19/2007 7:17 PM (GMT 0)
I just spoke with her doctor (although he had to take another doctor's call and is calling me back in a few minutes). Her bloodwork came back pretty good-no anemia, sed rate ok, white count ok. The doctor is concerned that she is not responding to the steroids. If he puts her on 6-mp it will take a few months. What to do now?! He suggested a Remicade infusion (or two) in the interim. Before all this, he still wants to do a colonoscopy to see what is happening.

I don't want to make any decisions! I am so unsure that I will make the wrong one for her. I did mention that I had heard that sometimes if you are on Remicade and stop and then try to start again it doesn't work. He said there are studies about that. Right now he is concerned because she isn't responding to any medication she is on.

I'll keep you posted.

Posted 10/20/2007 3:46 AM (GMT 0)
It's very hard to decide-- no question. Can doctor do a scope w/o major purging? Please keep us posted as time permits. / Old Hat
Posted 10/21/2007 1:11 PM (GMT 0)
my doc won't do remi for a short period. there are a few other drugs out there that really helped me, but not sure they are now i've been on them for years
colestid--my doc said in studies one gram tab could hold i can't remember how much diahrrea
gastrocrom-not marketed for uc, but my insurance pays well.
Posted 10/21/2007 2:07 PM (GMT 0)
My GI also doesn't use remicade for short-term treatment. It can take three infusions before some people respond anyway, so it isn't that effective short term.

On a positive note, I had the three-infusion induction for Remicade about four years ago, then had to stop because my insurance quit paying for it. After it was approved for UC, I started again and it worked beautifully. So it isn't true that it becomes ineffective for everyone.

In my case it's the whole array of drugs that works together to keep my UC in remission. If I try to taper either the Colazal or the Imuran, I'll start sliding toward a relapse, and those two weren't able to control the disease until the Remicade was added. I guess we're all just different and require individualized treatment.
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