Remicade

Hi all, I have plans to start on Remicade next week, and I am interested in hearing about others' experiences with it. I've had UC for about 12 years, and have never fully been in remission. My best years were during my pregnancies, but symptoms have never completely gone away, and now my doctor recommends Remicade. I'm currently on prednisone (tapering), Asacol, and Rowasa. Have tried in the past Imuran and Flagyl, and some diet things.

My concerns are the possible scary side effects like cancer and infection.

lizzie, when was your last c-scope, are you in endoscopic remission during the period on remicade, or jut clinical remission?

I started remicade a little over a month ago. I was coming off a bought of cdiff and was in the middle of my worst flare, the pain was absolutely crippling. I was taking prednisone and started the first infusion of remicade. I was certainly hoping for a miracle but I had no symptomatic changes after the first infusion. I also didnt have any side effects.

about a week ago I had my second infusion, while the change isn't overnight (for me at least) I'm gradually starting to feel better. I have minimal pain (unless I push the envelope on what I eat) and my stool is finally starting to form. In retrospect, if I compare how I feel today to how I was a month ago, it's absolutely night and day. However, I'm still far from remission. But I can at least work and function. I'm hoping the progression continues.

My next infusion is October 15th and I'm anxious!

I had my first remicade infusion this past Tues. No improvement so far, but it's only been a few days.

I recommend you read "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases " by the Chron's and Colitis Foundation of America. http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Here are some excerpts:

Slide 21: Main Side Effects of Anti-TNF Treatment
So going to malignancy first. And, again, I think these are the most concerning to both patients and providers and families when you think about starting a medication that might actually cause cancer, which is a scary thing to think about. But to remind you of the baseline risk, meaning those people walking around on no medications at all of non-Hodgkin’s lymphomas, about 2 people out of 10,000. On the immunomodulators, it’s about 4 people out of 10,000, as I mentioned a few slides ago. If you’re using anti-TNF medications along with immunomodulators, although the risk is a little bit higher, it’s still about 6 people out of 10,000. So, again, the new story would be a triple risk from 2 to 6, but still a very, very small number.

Slide 37: Putting Risk in Perspective
We also need to put this in perspective, that just being alive and walking around the planet, we have risks of bad things from happening to us. Although very few of us have either been struck by lightning or know somebody who’s been struck by lightning, it happens. But look at these numbers for other things that we do every day. The chance of dying over your lifetime from a biking accident is 1 per 5,000; drowning, 1 per 1,000. And believe it or not, in the US, the chance of dying in a car accident is about 1 out of 260. The chance of dying from cancer is 1 out of 8, and the chance of dying for heart disease is 1 out of 5. Now, remember this isn’t patients with Crohn’s disease. This is people in general. So when we’re talking about side effects of medications on the order of 1 per 10,000, 6 per 10,000, we’re taking extremely small risks to help make you feel so much better and get the quality of life back to where it should be.

I just started on 9/3. Have my second infusion on Tuesday 9/17. I was posting updates from the first infusion as I thought I was seeing almost immediate results. However, more than likely this was from the Pred and the fact that I am so vulnerable to the placebo effect. Once the pred tapered down... bam... massive bleeding and pain again.

I just got back from the GI this morning who said that he was not surprised at all that I hadn't seen any results from it yet, that most of his patients don't until the 2nd/3rd infusion. Anyway... .don't know if he is just saying that to make me feel better or not but... we shall see.

As to the risks, there have been other people who posted, but they really are very small. Something like 2 in 10,000 get lymphoma without remicade. With... it goes up to 4. Add in 6mp or Imuran.. and it goes up to 7.

Of course, numbers don't matter much to you if you are one of the few unlucky ones.