Hi everyone, Just a quick question, I was on Remicade infusion (for Psoriatic Arthritis) every 6 weeks and I gotta tell you it was FAN-FRIGGIN-TASTIC until the third infusion, about 3 days after all my joints and muscles froze up. I couldn't move and the pain was pretty intense. I called Dr who sent me to ER, there they wanted to do an EKG but I couldn't put my arms down without shaking, nurse was like, come on honey can't you just put your arms down for a minute," and I'm like Oh sure I'm just faking this, for you I'll move freely and without pain,,,, blah blah blah, I was trying to make this quick sorry, anyway my Dr said the reaction, while not normal does happen and it usually happens after the 3rd infusion. He took me off the Remicade and put me on Enbrol, which for me does nothing. Anyone else have trouble after an infusion, I'm thinking of telling the DR that I want to try it again. Any thoughts?Hi Barabara, I have NO IDEA because I don't know anything about remicade or remicade reactions, but I wanted to post to bump your question back up to the top.
Barbara, I am so sorry that you had that kind of reaction. I have not and just had my third infusion. It makes me tired as heck, but I seem to be doing ok, and have gotten some of that precious energy back.
I don't know if I would try it again. Did he say you reacted to it? I am not surprised that Embrel did not help...I think the FDA is going to try to move their approval of Embrel for PA. It simply is not the best med for it. See if you can try Humira. I did get a little relief, but not enough.
Good luck girl!
Wow, so sorry you had such an extreme reaction to Rem, that is what is so good about this forum we hear all sorts of things we wouldn't know about otherwise. I've been on it 500 mgs for 6 months and have only had good results. Every month I feel better, joints are not swelling (knuckles were so swollen I couldn't wear my wedding ring), so the benefits are huge. I don't know if I'd try it again though? It sounds horrifying what you went through. Lyndagksorry, I accidentaly posted gk, doesn't mean anything
Anyway, I had a strange reaction to remicade, worked great 1st time, ok second and third time, after that remicade start working aganst me making me flare so badly that I had to add prednisone up to 10 mg daily. I'm on Enbrel now and desperatly trying to get rid of prednisone. Painfully get down to 5mg and that is where I stuck for now. I don't know what to think of remicade, it's great drug for so many people, why it turned aganst me I have not idea. Sorry it didn't work for you, but if it any conselation you are not the only one,it's at least two of us.
Best wishes..... Luda
I am currently at 400cc every 8 weeks, and called RD on Thurs to get it bumped to 500 every 6 weeks. My initial few time were pretty good. about the 4-5th it just did not seem to do anything. Called RD and he bumped it to 400. That worked one time then nothing this last time. I am by no means as bad as I was originally but it is just not as effective. Keeping an open mind for finding the correct dose and frequency.
Waiting for Dec. 3 and my next infusion.
Jay
Thanks for the testimony regarding your reaction to Remicade, I had never heard of that! < =text/>_popupControl(); I don't think it can hurt to ask your doc if you can try the Remicade again especially since you did have such a great response to it. However, I will caution you that if Remicade is stopped and then started up again, it does make you more susceptible to an allergic reaction. So please keep that in mind also.I agree with trying Humira instead of ENbrel.