INFLIXIMAB/REMICADE

Welcome. I haven't taken remicade but many, many people here have and do. Try to do a search through older posts and you'll find a lot of information.

Hi,

I decided to try Remicade when Humira didn't work for me. Around the beginning of October I went for my first infusion. I had no problems with it save for being tired the next day, in fact, I was already starting to feel better by the next day. I had another infusion that went great and I quickly began to feel fabulous.

Unfortunately, I had a terrible allergic reaction about 20 minutes into my third infusion. Within about 5 minutes, I went from feeling flushed to my blood pressure sky rocketing as my pulse raced and my chest tightened, I couldn't breathe like an elephant was sitting on my chest. Once I convinced one of my infusion neighbors that I was having issues and he yelled for help for me, the nurses came running and gave me a crapload of anti-dying goodness and about 20 minutes later I was better. They immediately stopped my infusion and put me on an open saline drip. I slept there for a few hours until they decided I could leave.

I'm sorry for such a scary story when you're already nervous, but I was terrified- I literally had the "this is what it feels like to die" thought. The worst part is that I hadn't felt so good in almost a year, but both my GI and my GP recommended I stop.

Now, I'm trying low dose naltrexone- hoping that boosting the immune system will work better than killing it did. If you have any other questions, let me know.

And remember, this is just my story, Remicade has given many people their lives back and has that same potential for you.

I do not take Remicade, but many on this board have had great success with it. Give it a try, you could get on the road to good health. Good luck!

I started Remicade in November (I have just had two of the first three loading doses) and after the first dose, I felt better, but after the second I REALLY felt better. My third dose is in a week and right now I have a horrible head cold which I am hoping is gone so I can have my 3rd infusion next week.

I was scared senseless to get started on it, but I am so glad I did. I have had more energy, more desire to do things and a lot less pain. I feel like I have gotten my "life" back, if that makes sense.

The only side effect I have noticed is I did get a headache the day after I had my last infusion. They have not pre-medicated me, and maybe that is because I am still on pred but trying to get off.

If you haven't already, you can go to Remicade.com and request to have information sent out to you. I did that and they sent me a booklet along with a DVD about Remicade and Crohn's.

Best of luck to you and I sincerely hope Remicade helps you!

Hi Chantal,

I was on Remicade for over 2 years. I wasn't premedicated during any of those, and I had gotten up to the maximum dose every 4 weeks. The only reaction I had was fatigue the first few times and an itchy rash. I had developed antibodies to the Remicade, which is why I finally had to come off it. I was also on Imuran and then Methotrexate during that time. It really helped my arthritis and did some good for my Chron's when it was working.

Good luck to you,
Dani

Any one experienced a manic reaction on remicade with lots of tears and muslce twitching, felt very tired initially with concrete arms and legs but the tiredness and heavy limbs went. still struggling with the rest