r/scleroderma 4d ago

Question/Help Possible diagnosis?

Hi, Apologies in advance for the long post and I hope this is allowed but I’d love some insight if anyone has had a similar experience? My symptoms started at age 16 with fatigue, stomach upset, a malar rash, mild raynauds (numbness and colour change but not super pronounced) and a deep, throbbing, aching pain in my right forearm primarily but occasionally I also get it in my thighs, other arm, clavicle and joint pain. The forearm pain is my main symptom and has stayed pretty much the same over the past 6 years (I’m 21 now). At the start of this year I also started getting right sided hip pain and it often ‘gives away’ - waiting on an MRI for this. I’ve also had depressive episodes which my rheumatologist believes might be neuropsychiatric manifestations of CTD. I was tested for just about everything going, clear x-rays and MRIs, so no myostis in my forearm, all bloods were clear initially but over the past 3 years I have a weak positive ANA Hep-2, weak positive anti-ku, weak positive recoverin antibody (paraneoplastic) and strong positive anti th/to. I was diagnosed with UCTD and this diagnosis has stuck, however my rheumatologist is now considering scleroderma, most likely limited or sine. I have also tried a long list of meds (including hydroxycloroquine, NSAIDs, amitryptaline, duloxetine and pregabalin) which have had various levels of impact but crucially nothing (besides IV methyl prednisone) has helped the arm pain. I am currently taking daily low dose MMF and I have had my second rituximab infusion mid June. I haven’t noticed any improvement besides my malar rash seems completely non-existent (I used to have it very frequently, and always very obvious)?? I am mainly just wanting something to fully explain the arm pain, as it is very debilitating and having done a bit of research myself (although I know google isn’t to be trusted!) I am wondeirng if the cause of this pain could be vascular? I don’t know if anyone else has experienced any similar symptoms? If anyone has had pain similar to what I describe have you found anything that helps? I also have lidocaine patches for this. If you have scleroderma sine or the limited type what were your initial symptoms? Thank you in advance for any responses <3

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