Hello everyone,have been put on oral steroids for 2months to reduce inflammation,have had 5 biologics over 15years,some worked,some lasted a few years then failed, some did nothing.Seeing my rheumy in January,seems I've had everything availiable and am worried about future treatment,know I can't stay on steroids permanately,is anyone else in this situation?

5 Replies

  • I am I a similar situation but he agreed I could try Rituximab, have you tried that one. My Rheumy said he would keep going until he got me controlled. Are you concerned about the funding?

    I've had, mtx oral and injection. Sulphasalsine, Arabs, enbrel, Humira, Remicade infusions , and now Rituximab and going back on mtx next few weeks as well .

  • Hi Allanah,tried Rituximab,but 40mins into infusion had allergic reaction,so will never know if it would have helped.No concerns about funding, just what they can give me next, lots of things in pipeline, but not availiable yet,can't bear the thought of months of agonising pain after I finish steroids, feeling pretty low at the moment,thanks for your reply.x

  • I had the same reaction to Remicade! I hope though they find something that help , my Rituximab does a good bit X

  • Sounds interesting.... I feel the same as you about the steroids and try and limit them if at all possible. All the best, Doreen

  • I got a nearly four month (two months full dose then reducing) course of steroids at one point for spondyloarthritis. For me, it was because I wasn't eligible for antitnfs and didnt have any other treatment options. My rheumatologist suggested the longer than usual course for two reasons - to give me some decent relief for a while, and to confirm that it was an inflammatory arthritis. It was nice to have that three or four months of feeling quite good, but I was under no illusions about inflammation (and pain) returned at the end of it. Still, I was quite happy to do that as having that decent break from pain allowed me to cope better with it when it did return. I am still not eligible for antitnfs (long story, but basically my current rheumatologist won't accept my confirmed diagnosis of ankylosing spondylitis) so steroids are still my only effective treatment. I am allowed a short course (about two weeks) every three months, but try to stretch out the time as long as I can between courses - sometimes up to 6 months - and then only take it when I'm really not coping with my essential daily activity and part time work, and for as short a time as will give me a bit of an inflammation/pain holiday. The rest of the time I just have to deal with and accept the pain, stiffness and limitation.

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