Thinking of starting Remicade. Some questions.

I am in the hospital for the worst flare I have ever had. I let it go for over a month because I couldn't take time off of work, which is something I know better than to do. I ended up here, and I've been here in the hospital for over a week now. They have me on intravenous steroids as well as 33% more Colazal than I normally take, in addition to my usual 100mg of Imuran. My C-reactive protien (measure of inflammation) went from 8 down to 1.1 (normal is >1) and now it has gone back up to 2.4, and I'm seeing blood in my stool again.

The doctor says I am not reacting to the medicine any longer and so we must take the next step, which is putting me on Remicade.

Remicade is a long term, expensive commitment and I do not want to jump into it without knowing more about it. I understand how it works and I understand the dosage information with regards to bi-monthly infusions, but I'm after some first-hand testimonials about how well and how quickly it works. I want to know as much about it as I can before I give doc the go-ahead to pump me full of the stuff.

How fast does it work?
How well does it maintain remission?
Can I expect future flare-ups?
Any side effects I should know about?
Any tidbits of information that I would find useful?



Thanks in advance,
Mike

Hi Merlyn, and welcome to HealingWell! I'm sorry you are in the hospital; but I too am on Remicade, and have had the same great results as Judilyn. Now this is my story, and I can't say everyone has been the same; some say it takes about 3 or 4 infusions before they feel results. I had immediate results and have never looked back. I feel good and live a very active life. When I first started the treatments I was so sick I prayed they would work. I'm back to living life again and very happy. I've had no side effects, and the longer I take the meds, the better I feel. I used to have some time in between infusions where I had a little urgency or fatigue, but realized it was because I was close to my infusion. Now I feel good almost all the time! Good luck, and if you have any other questions, please don't hesitate to ask. Take care and let us know how you are doing.

While I haven't achieved what I'd consider a complete remission, the Remicade let me get off Prednisone after being on it for two years and likely being steroid dependent. I have to have it every six weeks rather then eight, which keeps me at an "almost" remission. I occasionally have to go NOW and have some near misses, but nothing like it was before the Remicade. I have 2-4 bathroom trips in the morning, but things settle out fairly quickly and I tend to be fine most of the day, until it starts to get close to six week. Every once in a while I'll have a rough day ... I am trying to figure out whether it's something I am eating, not enough sleep or perhaps stress.

I tolerate the Remi better than most of the meds I have been on. I find the infusion time almost pleasurable -- a two and half to three hour time that I am forced to just sit and relax. The nurses are so good that getting the IV in doesn't hurt at all. I bring my Zune MP3 player and watch or listen to podcasts or music, I read, do needlepoint. The infusion clinic provides a meal if you're there over a meal time but it is pretty disgusting so my routine is to stop on the way and bring my breakfast and decent coffee or tea drink.

As far as cost, I am extremely lucky, I have no cost at all, not even a copay. I asked and was told my dose is $4,000 a pop!!

Good luck, hope it works for you. I am having a look-see in October from which I need to decide if I want to go for surgery or not. Like I said, it's improved my quality of life a lot, but I am still having enough issues that surgery may be in the cards.

Meesh

Can anyone clarify whether Remicade counts as a treatment or a prescription in the USA? (For those of us with insurance but no prescription drug benefits...)

Emory - I have have BC/BS and it is considered a treatment - not a prescription.  It actually shows up on my statements as "chemotherapy."