Seronegative spondyloarthritis

Pea

Just been diagnosed with seronegative spondyloarthritis today by my rhumatologist. Just wanted to share my story. I have had pain in my hips for 3 years, visiting GP after GP to be told I've pulled a muscle / have bad posture cause I'm tall / over did it at the gym! I finally seen a GP who sent me for X-ray which showed inflammation in sacro illiac joint and degenerative changes he diagnosed me with osteo arthritis (which didn't make any sense as I'm only 30 and have no risk factors!) not happy with this I had to ask my GP to refer me to rheumatology for a 2 nd opinion he reluctantly did! Rhumatologist asked for mri of sacro illiac joints which showed changes and damage so got diagnosis on 2nd visit today. Glad to have diagnosis, been prescriber anti inflamatories, 2 month follow up, hydrotherapy and been given information about adalimumab (the next step in treatment) I am scared about what future holds now, anybody any experience? I have felt at times that drs have not took my pain seriously enough and I'm a bit angry at the GP system. Just a note that you know your body and pain and you know that something is wrong, don't take first answer, ask for 2nd option to put your mind at rest, don't be fobbed off!

dreamdaisy

Oh what a bummer, you poor thing I am so sorry. I have a lot of trouble with my SI joints (and a few others too) in fact I can feel them twanging as I type. I have a sero-negative arthritis plus OA, the latter caused by the former. The good news is that at least you know now what is going on and why - will you also be taking methotrexate as a support for the humira? DD

Pea

He did not mention methotrexate today, just prescribed celexicob and gave me a review date in 2 months time to discuss other options oh and i had a steroid injection x feel bit down ,going to take me a while to get my head around, but yeah I am glad I know what it is now thanks x

Boomer13

Hi Pea;

Sorry to read of your diagnosis but glad you were assessed by a rheum and now will receive (hopefully) effective treatment.

I have had intermittent SI joint trouble/inflammation for years (since 17yrs) It didn't really settle in and become disabling until my late 30's and wrists became affected. Now 47, just was diagnosed with PsA with spondylitis. It has affected SI joints, hips, neck, upper back, now virtually all joints excepting elbows. My own (and now no longer my GP) was very sceptical about my need for a rheum consult. I didn't push for one and only received a referral by seeing a locum once. I am now a firm believer in multiple opinions and self-advocacy, tho' really wish one could implicitly trust one's GP. It's very hard on a person not to have your pain taken seriously.

It's no wonder you feel down, it's such a long, frustrating, life-disturbing process to get help sometimes, plus with two little ones in tow; the worry must have been awful for you.

Visiting a physio may really help you, as was mentioned (not sure if it was this thread or a different one). You mentioned hydrotherapy so maybe you are already seeing one? I receive deep heat treatments for my SI joints and hips and find it really gives relief. I also have specialized exercises for hip and lower back to help preserve muscle and flexibility. These really help.

Sorry, I can't help with the biologics as I haven't tried these. Wish you the best of luck and hope you start to feel better soon.

Anna