Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Poll - Remicade - yeah or neah?

Danni,

I was on Remicade and stopped after my 10th infusion because of the infusion reactions, which were similar to what Geez mentioned.

While receiving an infusion, I met a woman with Rheumatoid Arthritis, who had been receiving Remicade infusions for 10 years.

I found that Remicade made a significant difference and I had hoped for more.

Best regards,

jcwinnie



Pictured above: a person with RA receiving a Remicade infusion

(They developed the BASDI, BASFI indexes we use in our diagnosis of AS)...I was privilaged to sit in on 2 doctor conferences (one over a 100 Dr.s in attendence) - Dr. Stone was key speaker, she is driven to help this Disease. ?????

Well I hope not! Those indexes exist to measure the extent of our disabilities; the trick of course is to avoid them.

And what's he then that says I play the villain
When this advice is free I give and honest

Hi Danni,

Welcome to KA. I was on Remicade a few years back. It worked wonders for about one year and then seemed to lose its effectiveness. While it worked, I felt as if I had my life back. It was well worth it and wouldn't hesitate for a moment to take it again.

Best of luck in making your decision!

Cat

Hi Bilko,

While I can appreciate that your view on treating AS does not easily allow you to recognise the credentials of such a highly regarded medical professional, the work that Dr. Stone has dedicated herself to in advancing the collective knowledge of this under-researched disease, will surely be of benefit to all ASer's regardless of our current perceptions.

I am personally involved with 2 of her ongoing research studies. One focuses on predictors of outcome. By collecting clinical and genetic material (DNA), the aim is to find the MIX of genetic and environmental factors that are linked with AS. The second study is the genetics of response to biologics in AS. This should aid in risk aversion by predicting which patients will have a positive response to treatment.

I agree that those indexes were designed to measure the extent of our disabilities. It makes sense that gaining knowledge about the varying stages and outcomes would naturally precede gaining knowledge/tricks on how to best avoid such outcomes. Why not learn as much about AS as we can? How can a better understanding of this disease from every angle of study, serve to be a detriment to any of us? Who knows, she may even prove you right!

Take care,

mig

Hi George,

The pain vanished along with my tooth, so now I'm happily well into the healing mode, and back off of pain meds. Thanks for asking!

Hope you are as well as can be!

mig

Hi Danni,

Remicade worked very well for me, but I developed antibodies against it after having a too long break between the infusions. This caused an unpleasant allergic reaction as well as rendered Remicade useless. I was on Remicade in the "early days", and they didn't know as much about the infusion break/antibody development stuff as nowadays.

I also had problems with repeated bout of tonsillitis while on it. Initially, it was only some regular tonsillitis that many people had in school, but I had an allergic reaction to penicilline in the middle of the course and the ER dr put me on a big dose of cortisone for a week without giving me another antibiotic. That plus the huge cortisone dose turned the tonsillitis into a ping-pong game for a while, but eventually it healed out after proper antibiotics.

Other than that, I didn't have any problems with Remicade, and while it worked, it worked really great.

Currently, I'm on a similar med called Humira, which is working great for me.

Good luck with your decision,

Nina

Forgot to add - despite the annoyances I had while on Remicade, I'd do it all over again. Remicade helped me so much that I almost thought it was a miracle.