what to do

Hi everyone,

Havent posted in a bit. Hope everyone is good.

Still having issues with my joints and eyes. Bowel seems ok except for sharp pains on left hand side and a lot of bloating with no gas. Continually being told by my rheumy that my bloods and scans are fine and that my issues are wear and tear. I had some pred left over from a taper last year. I know I should not have done this experiment but I did try some high dosages over 2-3 days a couple of times and bingo...my joints, eyes and bowel get really really good very quickly. Obvs lose response then after the 2-3 days.

My feeling here is that my GI and Rheumy are missing something and are hung up on bloods, scans and stool test results which are all normal. But I don't feel normal and I improve on Pred rapidly.

What would you do? Would you push for more testing or change of drugs....currently on Mtx and Humira

Thanks

Hi sorry to hear about your continuing problems. I had the same question as above. Are you at a "good" hospital? My sister in the UK found she got vastly superior treatment for her autoimmune problems when she switched to a university (i.e. research intensive) hospital....the rheumatologists at her local hospital didn't know sh** (including how to manage antibodies on humira...) and she was suffering for months/years. She has ankylosing spondylitis and crohns, both of which were diagnosed far too late because of incompetent doctors...