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Just diagnosed and doc wants me on imuran and remicade, scared!!

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Ulcerative Colitis
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Posted 6/26/2014 9:04 PM (GMT 0)
I have really enjoyed reading and amazed how knowledgable every one is on this forum. I have posted a few times and I continue to have problems. I was diagnosed 4-14. Tried Lialda and UCersis for 1 month with improvement, but nothing close to remission. I then got pneumonia and had a horrible flare with the antibiotic. They put me on 40 Mgs of prednisone and stopped the Lialda as it was coming out in my stool. It worked for 3 days like magic. Then they tapered to 30mgs and tried balsalazide. That made me much worse. D 15 plus times a day and a lot of blood. They upped my prednisone back to 40 mgs, but I am still not close to normal. BM 5 times per day and up every night. Still experiencing urgency and tensesmus. It has been a total of 3 weeks on prednisone. I just talked to the nurse and she said I am not responding to the prednisone as I should be 100% and I can't stay on it. They want me on imuran and remicade. This seems like a lot to me and so sudden. I didn't even realize people were on both at the same time. Does this seem like overkill or is this the next step? It kind of sounds like I am already at the last resort and I was just diagnosed. This is all happening so fast I am having a hard time processing. I am going to U of C IBD clinic so they supposedly know their stuff. Thanks for any advice or wisdom anyone has.
Posted 6/26/2014 9:53 PM (GMT 0)
Hi Why Now, and welcome to the forum. When I was dx'd, Remicade was a very new med, but my GI decided to start with the big guns first and work down. It worked well, and I've been in remission since I started the Remi, and now am on maintenance meds (about 10 years now!)

I believe that it's been successful to start patients with the bigger meds to start quicker healing of the colon and then move down to maintenance meds when things are under control. Some are still taking Remi  and doing well on it.  As always, it works for some and not for others. 

My only other issue is that they are starting Imuran with the Remi. My GI took me off of that about six months into my therapy because of an increased chance of lymphoma...but I think it was more cautionary because of reports.

Carol

Posted 6/27/2014 12:10 AM (GMT 0)
it seems like that strategy is becoming more common - I'm not sure I totally agree with it, but it does seem to work for some -
Posted 6/27/2014 1:42 AM (GMT 0)
It always seems that the first flare is one of the worst. I have since had several really bad ones. I have been taking Imuran, or azathioprine for over 10 years. I also take Pentasa, recently switched from Lialda because of insurance. I also take a biologic, currently Cimzia.

It seems that treating UC is a guessing game. Nothing seems to work for everyone, and everything doesn't work for anyone all the time.

My diet has never had any effect on my disease or flares as far as I could tell. I feel that I may now be going into a flare as I have been on Pentasa for about 2 months, instead of Lialda. I can't say for sure, because I've always had a few flares a year, usually mild.

Hang in there, and I'm sure they'll find they combination that works for you.
Posted 6/27/2014 4:40 PM (GMT 0)
If the C was Chicago, you are in good hands. Remicade has a good safety profile. It is common and more effective to do dual therapy. I'd only question why Imuran vs 6mp....it is more typical. The lymphoma risk are quite small but they do increase with the Thioprines ( not the biologics).
Have to tried rectal meds for the urgency? It's hard to keep them in during a flare. Stay hydrated. Glad you are with high level docs, it can make all the difference. Best.
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