I was diagnosed with Adult onset Stills Disease aged 17. Symptoms are rash, fever, sore throat, fatigue, bilateral stiff painful joints. I’m 60 now and apart from pain relief have been drug free since my mid 20s. I recall my medication as enteric coated aspirin, steroids, iron, distalgesics and Indocid slow release capsules. I wore wrists splints for several years and lived a relatively normal life. Thankfully I have no organ involvement to my knowledge. Menopause and age have aggravated symptoms of Stills and the covid vaccinations seem to have enhanced symptoms as well, In any event it’s all been worse these last few years.
I have Lichen Sclerosis and Interstitial Cystitis both likely associated autoimmune diseases. I have a strange sore itchy growth rash on my back and torso starting to spread down my legs. Previously I had a soft tissue growth between my gums removed in hospital which could be associated. I have a mild case of Sjogrens.
A new pain has arrived around the top of both hip areas in an arch above the joint and spreading across my lower back with crampy aches on my inner thighs and a strange numbing in my left arm starting in my neck. Fuzzy headaches and fever too.
My question is am I describing the start of PMR of is it likely just my existing illness evolving.
It doesn't really sound typical of PMR to me - but who knows. It is probably an extension of your personalised stillsdisease syndrome.
Could the new hip region discomfort be greater trochanteric pain syndrome? Don't know how to account for the arm problem - unless, like me, you have widespread myofascial pan syndrome in addition that is including more back muscles.
But I think you need someone more curious than your current GP. Are you under a rheumy or are you left to your own devices on the grounds of "you know more than me"?
thanks for your reply which I find reassuring given your knowledge of PMR. I have not seen a rheumy since my mid 20s and always managed with sprints or supports for joints and topical pain relief, codeine if it’s a bad day.
I should ask GP for a referral I think and get the ball rolling.
I can’t specifically answer your queries, but it sounds to me like you know something new is happening (even if it’s a development of Still’s disease) so I’d agree, ask for a referral to a rheumatologist. You’ve managed so well so far, I think you need and deserve a review.
Having said that, I can’t honestly say what you’re describing sounds like the PMR I’ve experienced….I doubt it’s that (although everyone’s different 🤷♀️).
All the best and I hope you get some good advice soon xx
Cambridgeshire, Addenbrookes is just an hour away and where I was originally diagnosed albeit in the old town centre hospital as the new one we have now was incomplete in 1979
yes I read one of two messages here about it. What I really want is my GP to do FBC with special checks for all the things that don’t show up in our odd AI cases. Assuming Stills activity I would than just like a script for whatever replaced Indocid capsules as I know they worked for me. I wouldn’t even need an appointment 😄
thanks, I’m not considered at risk and recall no side effects at the time of taking Indocid, although it was 40 years ago. In fact I recall no side effects from the steroids or other 20 or say tablets a day that I took back then except the iron and we all know what that does 😝 I think I was lucky and only on significant doses for a few years. I even managed to replace some bone density in my late 30s by weight training but sadly I’m too sore and stiff for that now
I’m afraid I know nothing much to help you but improving the immune system has helped a lot with my Lichen Planus which is due to a poor immunity . On rashes and spots etc I find Aloe Vera is good. My problem seemed to arise at the time I had my covid vaccine. Related or not I doubt I shall ever know. Keep asking questions and good luck with your health issues.
Hello stillsdisease, sorry to hear about your pain and discomfort. It does seem that a referral to a rheumy is the next step (if you can get an appointment, not easy these days). It seems we have had a broadly similar path through life (I’m 61) - I was in my 20s before a different doc decided I had probably been suffering from Stills - symptoms since age 15 but woefully misdiagnosed at the time. I’ll cut out the details of the intervening years but in late 50s every PMR symptom in the book surfaced - hence I read this forum - but rheumy finally decided it is seroneg RA. My first contact with a rheumy since my 20s - so you are not alone! All the best
hello, welcome, it’s so rare to speak with someone who knows what Stills is. Sounds like you and I experienced similar as you say. Glad you now have a definite diagnosis, are you feeling ok? This is a great place for information and support, I find it more responsive than NRAS. Thanks for your reply😀
I read PMR, Lupus and NRAS due to the overlap. Whenever I research Stills there is reference to Lupus. I sense that RA produces more suffering than Stills. PMR seems hardest to diagnose and treat and Lupus is dreadful too though there seems to be better awareness of Lupus these days. Whatever the suffering it’s hard and I wish relief for us all. Take care
Hi, I read the NRAS threads as well as not an official PMR sufferer apparently! Three nightmare years (with a pandemic thrown in making it hard to get appts, treatment etc) now on methotrexate (MTX) after dabbling with pred. Good luck with your appointments and diagnosis. MTX is a challenging drug, and not much favoured by the PMR people on here but it has restored my mobility and reduced pain…….time will tell I guess! Good luck
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