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year long battle - when to change meds?

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Ulcerative Colitis
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Posted 3/20/2010 4:52 AM (GMT 0)
Well I am once again having a flare up. Every time I get around 40 mg of pred I start showing symptoms. I am so tired of this... I am wondering if I should pressure my Dr to change my meds up. When I get my labs done they say my meds are not in the therapeutic range yet and they up the dose. I am now taking 200 mg of Imuran, Lialda and my ongoing pred. I do not think I have been off pred more than 4 or 5 weeks max since last year. I am tired of the pred... It makes me a different person and I have had all I can stand. I have gained a ton of weight, makes me tense, constantly hot, and never able to sleep.. Something has to give...
Posted 3/20/2010 4:56 AM (GMT 0)
If I were in your shoes I'd be all about going on Remicade, because I just won't let myself be on pred for that long.
Posted 3/20/2010 7:32 AM (GMT 0)
Hi, fruitgirl...

 

Although I don't feel Remicade was the best option for me, I've heard of a LOT of people who have had fabulous success with it. That may be your next step. I'd rather be on that than the steriods long-term. Do some research as there's obviously the list of side-effects, but both doctors I've seen are pretty for it.

 

Good luck!

 

Phyre72

Posted 3/20/2010 10:13 AM (GMT 0)
     I'm surprised your doctor hasn't mentioned Remicade to you.  My doctor hates me being on prednisone, but, like you, I have taken it many many times.  I was diagnosed in 98 and since then been on prednisone more times than I can count.  At the present, I am prednisone dependent.  I tried Remicade but was still on the prednisone when starting it.  After my very first infusion, I felt like a million bucks!  Two weeks later, after my second infusion, felt great too.  Then I was weaned off the prednisone.  Was able to stay off the prednisone for about two months.  After my 3rd infusion of Remicade I suffered a flare.  Suffered for another seven weeks, had my 4th infusion, still no change and then back on the dreaded prednisonemad .

     Starting Humira on Wednesday, down to 25 mgm of prednisone.  Prednisone has given me osteoporosis and high blood pressure and God knows what else it has done to my system.  Just hope and pray Humira does the trick and I can get off this crap.  If not, then I am facing surgery, which I am not happy about.  My symptoms are managable.  I found that if I take a teaspoon or so of Immodium after my second  or third bowel movement, the urgency goes away and I am good for the rest of the day.  I still have mucus and some blood but do have a narrow formed stool.

Posted 3/20/2010 10:44 AM (GMT 0)
Hi msucguy


Just wondered when you said your doctor keeps creeping the dose of Imuran up because it hasn’t reached the therapeutic dose yet - Have you had a blood test for Thiopurine s-methyltransferase (TPMT)?


This enzyme is used for the metabolism of the thiopurine drugs such as azathioprine, mercaptopurine and thioguanine.
Normally doctors are looking for people with low levels(genetic) because they break the drugs down much slower than most people and so are more likely to get the severe side effects, but some people have higher than normal levels of the enzyme and so break the drugs down before they can have full effect. In these people doctors can give higher than normal doses to achieve the right therapeutic levels.


You might want to see if they have done the test on you - because if you do have a higher than normal TPMT activity they could be more confident to change your Imuran dose to one that would help you more.
Sue

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