Advice for Better Living Archives

Who is taking Remicade and what have your results been?

I have been taking remicade since Oct 2000.  I have a dx of severe active RA, sudden onset, negative RA factor.This occurred in January, 1997.  I was on Arava before the remicade & it just wasn't doing the job. I had been on pred. 20mg for almost 3 yrs and was very slowly decreasing to where I was on 17 or 18mg when I started the remicade. Everytime I dropped a mg. I had severe painful reaction.I didn't get the overnight miracle some experience, but I have more of a gradual improvement.  The swelling in my wrists that I've had since the beginning disappeared a few days after my second treament but the pain seemed almost worse sometimes for awhile but gradually the pain has decreased and the pain medications I take are so much more effective.  I had my first hip replacement about 8 months prior to starting the remicade and had to have the other side done about six months after I was on the remicade.  I have had so much improvement on the remicade. I haven't had a day that I've spent entirely in bed after a couple of treatments.  I am able to go shopping with my hubby if I plan it during the peak of pain relief from the pain meds.  I can cook simple meals now and I don't need assistance in dressing, putting on shoes  and getting in and out of the shower if it's done later in the day.  I don't wake up in excruciating pain anymore.  I still have bad pain when I wake up in the mornings but once the pain meds start working I can start moving around and doing a few things and then come the mid to early afternoon I can accomplish more house cleaning and start planning my evening meal. For the first year the treatment didn't last the full 2 months and the dr increased my dosage I think 3 or 4 times.  The last treatment I got was in Nov and I'm due to have another one the 15th of this month and its effectiveness has lasted longer this time.  I sleep longer and better.  I don't wake up several times during the night anymore and I sleep sometimes 8 hours or more, something I hadn't done in several years.  I am also on the meth 25mg injection weekly and a host of other meds.  I was also diagnosed with myelodysplasia at the same time of the RA diagnosis.  It's also called pre-leukemia.  I don't have it yet but am on a chemo pill every 3 days to try and prevent it from developing.  I would be interested in hearing from anyone who also may have this combination of RA and myelodysplasia because I think the two are related in my case.  My dr has only treated one other person with this combination.  The good news would be that there is no one else that has this so I hope I don't hear from anyone.  I've gone on way too long.  Any questions, just email me.  Don't get to the pc too often but when I do I take care of messages first.  God Bless and I am ever thankful for the results I'm getting from the Remicade.  One thing I might mention is that one drawback is I have had a few infections more than usual because of the suppression of the immune system.  Right now I'm being treated for an eye infection resulting from the same virus that causes fever blisters only its in my eye.  Never heard of it before but leave it to me to come up with something like this, although I guess it can be common in people with RA.  Once again I hope no one here has experienced this complication.  God Bless - Katy