PMR symptoms or flare of Stills Disease?

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.

Thanks for reading.

[DorsetLady PMRGCAuk volunteer]

Sorry, can’t answer your question, but hope it’s not PMR adding in more issues…. 😊

[Hidden in reply to DorsetLady]

thank you.

Stills is rare enough for there to be a lack of information from other sufferers. I have tried NRAS and found just two adults.

GP is clueless on Stills hence I self manage but when a pain is new or different it’s concerning.

I’ve known for a while I really need to approach GP but even the the drug that worked for me in the 1980s is no longer available.

🙃

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

☹️

[Hidden in reply to DorsetLady]

you’ve had it tough!

Inspiring lady!

[PMRpro Ambassador]

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"?

[Hidden in reply to PMRpro]

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.

[Nextoneplease in reply to Hidden]

Hi 😊

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

[Hidden in reply to Nextoneplease]

another reassuring reply thank you very much indeed, this site and it’s members are worth their weight in gold 😀

[PMRpro Ambassador in reply to Hidden]

Where are you? You need a "True Detective" as my mate over on LupusUK calls them!!

[Hidden in reply to PMRpro]

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

[PMRpro Ambassador in reply to Hidden]

Might be one there! Though I have heard complaints even about there.

[Hidden in reply to PMRpro]

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 😄

[PMRpro Ambassador in reply to Hidden]

Was it the capsules that were stopped or what? Indomethacin appears to still be available and used

And there is a parallel 1x daily drug - used for gout but I stupidly didn't write it down

[Hidden in reply to PMRpro]

indocid slow release capsules, I read of a contraindication with suicide.....??

[PMRpro Ambassador in reply to Hidden]

Applies to other things too, means closer supervision - but no, different substance.

[PMRpro Ambassador in reply to PMRpro]

Lumiracoxib - not sure if it is aimed at short term use though.

[Hidden in reply to PMRpro]

than you, when I get in front of my GP 🎅 l will be armed with your knowledge 😀

[Hidden in reply to PMRpro]

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

[PMRpro Ambassador in reply to Hidden]

Iron caused me awful diarrhoea when I was given it when pregnant! They were greatly put out - had to give me the expensive version

[Dizzart]

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.

[Hidden in reply to Dizzart]

Thanks, I’ve been using the steroid cream for LS in the LP, sparingly and there is some improvement in the thickness of the ……areas

[Cirrostratus]

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

[Hidden in reply to Cirrostratus]

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😀

[Cirrostratus in reply to Hidden]

I replied to you but it has gone on to your original thread, sorry I’m not very good at this!

[Hidden in reply to Cirrostratus]

I know that feeling 😉

[Hidden in reply to Cirrostratus]

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

[PMRpro Ambassador in reply to Hidden]

I don't know - there are a few really poorly lupus people.

[Hidden in reply to PMRpro]

yes I agree and at last more of the general population are familiar with the word Lupus and it’s implications which is a big positive 🙂

[Cirrostratus]

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

[PMRpro Ambassador in reply to Cirrostratus]

Only because it really does NOT work for many - PMR isn't RA ...