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Remicade? Good idea?

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Ulcerative Colitis
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Posted 6/3/2009 12:30 AM (GMT 0)
Hey everyone! I am allergic to asacol, lialda, and mp6, and so my doctor wants me to go on remicade and I am kind of weary about it because I don't know a lot about it and if it really works. Do you guys recommend it? Is it dangerous? Anyone have any good or bad stories about it?
Posted 6/3/2009 12:42 AM (GMT 0)
The worst part about it for me is that it lowers your immune system. When I get a cold, it lasts a little longer than normal, but it has done nothing but help me. It took me from a horrible flare where I was on the brink of surgery, to full remission.
Posted 6/3/2009 1:20 AM (GMT 0)
It worked GREAT for me.

I caught a bad cold since I started, but it cleared up no problem. In fact, I didn't even get the lingering cough I usually get after a bad cold. Probably just coincidence. But I kept up with decongestant (the good kind, pseudoephedrine) because I didn't want to get a sinus infection.

It may have risks but that doesn't mean you'll have any problem. The risks are worth it for me, this disease isn't easy on your body either.
Posted 6/3/2009 1:54 AM (GMT 0)
It put me in remission immediately but I had a serious reaction to the 2nd infusion. I had been in the hospital twice before I tried it so it made a huge difference for me. I was very nervous/anxious about the side effects, but I was desperate after being hospitalized twice with UC.
Posted 6/3/2009 2:28 AM (GMT 0)
It has saved my daughter's colon. Good for us for now. Yes, it has many dangers, but the upside is also quite good. "We takes our chances."...The Flares were life altering too.
Nothing else worked enough to be reasonable. The Pred. was so awful. She had every bad symptom, including suicidal thoughts. Cannot do again. Some have had luck with food and natural anti-inflammatory foods. We did not have a break even with the big guns until Remicade, I hope it works for a long long time.
k
Posted 6/3/2009 9:21 PM (GMT 0)
Remicade is a VERY good idea. I was nervous at first too, but I've been on it almost two years now and I was on the brink of surgery. My last colonoscopy in October showed all but the last few centimeters of my colon healed and looking good. The downside is I have infusions every six weeks instead of eight, and now I am having a very rough time as I get into my fifth week. REALLY looking forward to Saturday's infusion, I'll feel 100% better by the next day, I'll be almost symptom free until about 4-5 weeks after the infusion (my mornings can still be a little rough, I feel queasy the first hour or so of my day and can have urgent trips to the bathroom, but once it calms down, around an hour to 90 minutes after I get up and about I'm great for the day.

At some point I'll likely have the surgery as I don't want to be on all these super pricey meds the rest of my life, not to mention I don't like the idea of being on such strong meds indefinitely, but I figure the longer I can postpone the surgery the better.

Give it a try if your GI concurs. Bring plenty of things to keep yourself occupied during the infusion, the first ones can take up to four hours, but after two years I am in and out in 2 1/2 to 3 hours. I listen to podcasts, read, work on my needlepoint projects ... I always bring a breakfast with me as I go early in the morning and the hospital's breakfast is really gross.

It doesn't hurt.

Meesh
Posted 6/4/2009 2:58 AM (GMT 0)
I want to make this very clear. For most the benefits of remicade are very short lived. It worked like a charm for me for the first three infusions and then even after doubling my dose it all of a sudden provided no benefit.
Posted 6/4/2009 12:09 PM (GMT 0)
Each person is different, but Remicade has put me into remission. It took 4-5 infusions and the right combo of rectal meds, but it was worth it. I do sometimes worry about whether or not there will be long-term side effects of Remicade, but I'm willing to take the risk since I'd rather not flare or have surgery.
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