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Remicade Questions...

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Ulcerative Colitis
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Posted 3/23/2008 2:54 AM (GMT -5)

Hello - I hav'nt been on here for quite some time (good thing I guess), since I've been in 100% remission (again) for almost 2 years. I quit smoking in December 2007, only to have the UC come back again (this is the third time - guess I'd learn after a-while). In any case, I was put on Prednisone right away, which of-course worked for a-while, but became dependent real quick - just like last time. Flare is getting worse, so my doc put me on Imuran, starting @ 50mg/day. Well, as we all know, it takes awhile for the Imuran to start working (worked great for me last time - I tend to respond well to meds...), and it's just not working fast enough this time. Flare is getting real bad, I'm up to 52.5mg / day of the Pred (which I dont have any real side effects from, somehow) and I'm just so freakin' busy with school (I'm a Mechanical Engineering Senior) and life in general, I just cant afford to be in a flare right now! So, it seems that my Doc may want to get me on Remicade, or it is an option at-least. I've got VA healthcare, so cost is not an issue (its all free). I'm pretty sure the Remicade will work for me, as it worked great for my Dad who also had UC - and we seem to respond the same to everything. My biggest concern with the Remicade is that it seems to be the end-all UC drug. I'm worried that if I start with it, and it eventually stops working, there is simply no other option than surgery - which I really dont want. Even if it works for 5+ years, thats just not late-enough in life for me to be OK with a bag on my side (I'm 29). Also, I was wondering if anyone knows whether you tend to get 'dependent' on Remicade, as with all the other drugs? By this I mean, could I get a couple infusions, get in remission, and just stay that way without additional infusions - or will I be stuck on it for good? I have been successful in reaching remission and coming off all of the meds both times in the past with Pred and Imuran - seems I just cant quit smoking (same way my Dad kept his in remission for 20+ years), which is better to me than Pred and/or Imuran.

Sorry for the long post, but havnt been here in awhile, and want to give good background.

BTW - Im sure there's plenty of past posts that have the info I seek, but the search function on this site doesnt seem to work even remotely.... I tried and only got 2 posts in the last year with the key word 'pred' - yeah, right!

Posted 3/23/2008 10:42 AM (GMT -5)
Bruce, I'm sorry you're having this problem. First of all, Remicade is no longer the last option. Humira is now being uses, and there are newer drugs being tested also. The rate of development of new treatments for IBD is accelerating so much now, it's hard to keep up with it.

Remicade is usually given as a remission-producing and maintenance drug, which means most doctors recommend you stay on it. Some people do go off, but the risk is that there'a a 50% chance they won't be able to use it again if they go back into flare. When started and stopped, antibodies tend to develop that produce allergic reactions if the drug is re-started. You don't become "dependent" on Remicade. It works by blocking certain proteins in the blood (tumor necrosing factor - TNF) that contribute to the inflammation. When you stop taking the drug, the TNF comes back any you're back where you started. Eventually, you will probably develop enough inflammation to flare again, just as you do when stopping medications.

Perhaps looking at your situation from a different angle would help. You have a chronic condition that isn't going to go away. Therefore you likely need chronic treatment that doesn't go away. In your case smoking works, at whatever cost to the rest of your body, so that's an option. Medications also work, but can have some side effects too. Try thinking of your colon as a bridge. When you design a bridge, you put features in to support the bridge's weight where it is suspended, right? Do you remove those once the bridge is completed? Your meds could be viewed the same as those design features in the bridge.

As a former smoker who also developed UC after quitting, I would never smoke again and I wouldn't recommend it to anyone else. But that's your decision to make. As a person who made the decision to start Remicade two years ago, I've never regretted it. But that was my decision.

Think of all the options and future choices before you decide. Also, if your life is miserable now, is that a fair trade off for postponing surgery? And remember, it's likely you wouldn't need to have a permanent ostomy if you did have surgery. This is a frightening disease, and every next step I've had to take has scared the heck out of me, but I finally got myself to a good place. I hope you'll get to your own good place soon.
Posted 3/24/2008 9:25 PM (GMT -5)
I have had good luck with the Remicade as well. As far as surgery, which completely freaks me out too, on the plus side, whenever I read about people on the boards having had the surgery they all seem pretty positive. Couple that with the fact that more people seem to post when they are miserable or having bad results with something, and it tells me surgery may not be the worst thing in the world. At least, that's what I keep telling myself. I  definitely would like to avoid that route though.

But yeah, give the Remicade a try. It's helped a lot of people, and take things one day at a time. Worry about the time when it doesn't work when that time comes. Like Judy says, other options are coming in quickly.\

Meesh

Posted 3/24/2008 9:42 PM (GMT -5)
Bruce is fortunate to respond well to most meds. Imuran put my son in the hospital with acute panreatitis. He started with Remicaide during that hospitalization with good initial results. Unfortunately he developed an acute case of pericarditis as a side effect that landed him in CICU and scared the life out of us. It was not listed as a possible side effect until later so we were not recognizing or looking for the initial symptoms. Isn't Humira in the same family? If you start then stop Remicaide, does that mean that Humira is not an option?
Posted 3/25/2008 12:38 AM (GMT -5)
Mamasita, welcome to HealingWell. Remicade and Humira are both biologic medications, but an allergy to one doesn't necessarily mean you'll be allergic to the other. Remi contains proteins from mouse cells, and that is what causes the problem in many people who have adverse reactions to it. Humira, on the other hand, has all human protein so that source of problem is eliminated.

I'm really sorry to hear your son has had so many bad reactions to the medications. How old is he?
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