After being told I had RA in my hip, I had an MRI scan that was normal. I had a full physio re-assessment today (she's rheum specialist physio - one is a million!) and it now appears that is was the sacroiliac joint all along. I started humira last week, so we're hopefully that, in combo with my exercise programme, it will ease up.
Out of all my joints, it's the most agonising and I can grin the bear the pain in feet, ankles and knees when walking but this pain is unmanageable. Does this sound familiar to anyone else?
If its your sacroiliac joint then likely not RA, but spondyloarthritis. Ankylosing spondylitis in particular almost always starts with the sacroiliac joint, and SI joint inflammation on xray or MRI is the main criteria for diagnosis. Don't let anyone tell you its a man's disease though. yes, men do get it a bit more often than women, but there is still a lot of women get it (1 in 3 with is is female). Make sure you are seeing a spondyloarthritis specialist though - not just any old rheumatologist. You do need someone who has an interest in it as it is a whole heap harder to diagnose than RA is, and it really does need to be treated slightly differently, as DMARDs don't usually do much for it (though MTX or SSZ may help with peripheral symptoms). Exercise is particularly important to avoid fusing of joints, particularly the spine. NASS.co.uk has an exercise app that you can download.
Thank you for the helpful reply. Interestingly MTX, hydroxy, sulfa and lefllunomide did nothing for my 'hip' pain while some of my other joints settled for a short while before it all raged and I ended up moving to anti TNF treatment. So if it is definitely inflammation in that joint, is it likely my RA dx is wrong? I have seronegative RA with elevated inflammatory markers. I recall having the HLA marker tested at dx and it was negative.
I have inflammatory arthritis in my hands, wrists, shoulders, feet, ankles and jaw. I assumed spinal inflammatory arthritis meant it was usually limited to the spine and only a few other joints. Am I incorrect? Also, I have sustained joint damage which made them think my condition is more likely to be RA.
HLA B27 is not required for diagnosis of ankylosing spondylitis as not everyone has it. even less percentage in other forms of spondyloarthritis (like PsA). Spondyloarthritis almost always has enthesitis in other joints as well as spine, so yes, you can have quite widespread inflammation in other areas as well. The inflammation in spondy is typically at the entheses (where tendon and cartilage join onto bone) rather than within the joint on the synovial surfaces (which is more likely with RA). It might be interesting for you to have an assessment by a spondy specialist. For some reason, rheumatologists seem really reluctant to diagnose AS in the UK and seem to keep a lot of folk on a "seroneg arthritis" diagnosis for far too long. The cynic in me says that while they consider it seroneg RA, they can try all the cheap DMARDs first. if they diagnosed AS straight off, first line treatment is NSAIDs, and because a lot of folk can't tolerate those well, then the next step is straight to expensive anti-tnfs. To be fair though, spondy can be very hard to diagnose as there are no blood tests that will diagnose it, and it relies on expert interpretation of xrays or MRIs, and because the signs can be very difficult to separate from other forms of bone or joint damage, can easily be overlooked. There seem to be very few rheumatologists around who really do understand AS properly, unless it turns up in front of them as a very definite case in a young male.
I have suffered with low back pain and neck pain since I was in my 20's and I think that this is what's wrong. I'm seeing my rheumatologist next week so intend to discuss it with him then. Clemmie
Good luck. Please let me know how you get on, I'll be interested to hear. My rheum was initially quite dismissive of my pain in my hip/back/wherever it is!
I think many doctors are dismissive of back/hip pain. But I am going to push until it is acknowledged now. I had surgery on my lower back about 15 years ago but am still in so much pain on occasions. I find that often I can cope with pain but when I get pain elsewhere, it just gets too much. I was diagnosed with PsA and it seems as if the back problems go alongside that. Will let you know how I get on. Clemmie
I was having SI joint pain a few years before my RA diagnosis. It took awhile to figure out that the joint was the pain source, (I had a hysterectomy first) but once I did, I went to a pain doctor who gave me 3 steroid injections in the joint 2 weeks apart. When those failed to relieve the terrible pain long term, I had a radiofrequency ablation done in the joint. The first treatment lasted about a year, but after the 2nd treatment my pain has never come back! It has made such a difference and I am so thankful! Looking back, I do believe it was related to my oncoming RA as many health issues from my past now make sense. I hope you find relief. SI joint pain can be nearly unbearable.
I saw an osteopath who confirmed my hips have very good movement (thanks to many years of ballet!). He said my lower spine is basically frozen. The muscles around it have seized. I'm worried and scared.
Earthwitch, I got more out of your post than from most doctors I have seen. Thank you so much. What a gift this site is.
Hi, I recently diagnosed with seronegative PsA, I did MRI and 3d X-ray, the radiologist report said that there is no issue with SI joint, but doctors told me the SI joint is slightly affected, They prescribe MTX for me, but I did not start yet,
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