Any Stills Disease sufferers?

Diagnosed age 17, now 59 and interested to hear from others especially those with Adult Onset Stills Disease. I’m drug free since my mid 20s apart from pain relief but I know its the time to start RA medication as the pain and immobility increases and affects my quality of life. I also have Interstitial Cystitis, Lichen Sclerosis, constant sore throat and a strange growth of brown granular ‘moles’ on my back and chest. I last saw a specialist in RA 35 years ago, my GP has no idea what Stills is and looks everything up on the internet even the menopause and is still trying not to do in person appointments.

I’m double jabbed with a booster due January and sorry to say it’s all been worse since the first vaccination but will still go for the booster for complete protection.

I’m very tired of living in pain but dread the thought of starting the process with GP etc, I’m tempted just to ask for that good old drug indocid as it worked before. All comments welcome.

[nomoreheels]

Seems they’re a bit shy! I have RD not Adult Onset Stills Disease & whilst some of the meds used are the same the two are quite different as you'll already know. You do have quite a lot of other stuff going on, it must be difficult at the mo. Sounds like a Rheumatology appointment is needed.

We do have some members with AOSD. None of them are regularly active on the site but hopefully if they happen to see your post they'll say hi. Meanwhile, maybe use the Search box, try a few options AOSD/Stills etc, select NRAS from the list on the right & some previous posts should appear.

You probably know all there is to know having had it so long, nevertheless this might be an interesting read nras.org.uk/resource/what-i...

[Hidden in reply to nomoreheels]

Thank you for your reply, I’ll read that right now. You’re right of course I need seen and a treatment plan but I’ve got away with it for so long now I can’t face the nausea if it all and feel like shouting ‘ just give me the drug’ because as you say after living with it for over 40 years you become your own specialist !

[Hidden in reply to nomoreheels]

After reading your profile I feel quite fraudulent. I suspect I have been very lucky with just one major incident that supposedly was triggered by another bacterial infection a few months before hand. My main issue is pain and stiffness in my wrists, knees, big toes (alsonomoreheels), elbows, neck and hips, but I do manage. A good site you sent me to thanks again. 👠

[apttony]

Hi, this is the first mention of somebody with stillsdisease that I've ever come across!

I'm currently on this site because I was diagnosed with polymyalgia rheumatica (PMR) in 2018, but as a 10yr old in 1953 I was hospitalised with , what was labled as stills disease and spent the best part of 2 years �at on my back with both legs in splints. Needless to say it did not do a lot for my legs!

Still living with the after effects of muscle wastage. Had a few short bouts of the same in my 20's, but in the main, been remarkably clear until this PMR showed up.

It sounds as though you are far worse off than me - I regard myself as relatively lucky when reading some of other people's problems. I guess you are talking about the late '70s, and I'm wondering how you were treated then?

regards

[Hidden in reply to apttony]

Wow this is amazing, like you I’ve never encountered another Stills sufferer. I was diagnosed late 1970s when I was 17 in old Addenbrookes Hospital ! New addenbrookes is apparently a centre of excellence for Lupus. My week in hospital was for exclusion tests and so Drs could observe the rash and fever which only appeared in the afternoons. I recall being treated well but like a fraud. In the following years when attending the clinic for check ups I realised how lucky I had been and had escaped lightly compared to young children I saw there. I’m grateful. For the last 40 years I’ve lived well with the restrictions on activities, joint pain and immobility but you know what gets to me most is the constant sore throat. How have you managed, are you on medication, are you physically active or restricted?Thank you so much for your reply.

[apttony in reply to Hidden]

Hi again. I developed a very swollen left knee, and with a matter of days I was in Clatterbridge Hospital for a biopsy on the knee. That was 19th Dec 1953. By Boxing day, I'd my had appendix out and a couple of weeks later, I was passing blood. Not a very good time, but there was a good side to it all. My school had a collection for me and wanted to send me to Lordes, but my mother went through the roof! "He's not going with all those really ill people", or words to that effect. So I got a train set instead, and the nurses would move a table next to my bed and we'd play for hours.

Yes, being there with kids in iron lungs, metal frames on their pelvis and legs, or full body frames, and out on the ward veranda in all weather. Made me realise how lucky I was.

After a couple of years all went well, but never built the leg muscles back up to what they should be like. Physio I suspect has come a long way since then. The only treatment I can remember was Gold injections - should be worth a fortune.😀

Had a couple of bouts of swollen knees in my 20's, but they only last a couple of weeks.

Gradually got back into sports, running & rugby (but only liked holding the ball when I was unlikely to be tackled - very wary of getting hurt. Cycled a lot in my teens, into North Wales, and thought nothing of doing 100miles in a day. Been reasonably okay until PMR raised its head.

[Hidden in reply to apttony]

Another Stills sufferer has appeared on the site LASKA92, you may have already messaged. Interesting we’ve both only recently encountered each other and now a third sufferer has arrived.Anyway how are you and did you get a flare post vaccinations?

[apttony in reply to Hidden]

Hi stillsdisease. No problems other than an aching arm and feeling 'off' for a day after a jab. Now had my 4th, though I had to push GP for it. To what effect, remains to be seen, now working may way down to 6.5mg/day; again! Still going out walking, though a bit of a 'plod' - knees are giving me trouble, but hey what, I'm still here.

😀

[Laska92]

Hello , I’m a fellow adult stills sufferer , finally diagnosed , though they still have “probable” adult onset stills disease on correspondence . Please see your gp as they will refer you to rhuemotology again , and you can benefit first hand from the great biological meds they now have , I have infusions of toclizab and it has been life changing . The fire 🔥 has left the building , though the crumbled body remains 🤣🤯, I cannot imagine the misery you have been through as nobody had heard of it around here until lately . I hate the way it is know as a adult stills “disease “ as it sounds like something dodgy you picked up 😱 , wishing you good luck 😉

[Hidden]

HELLO, amazing to hear from a fellow as they say, thank you for getting in touch.Yep I agree AOSD does sound odd and as my diagnosis was given when I was 17 it’s been applied to me. At the Stills clinic in Addenbrookes hospital in the late 1970s I saw toddlers with the disease and onset is more usual in the under fives I’m told. I’ve been lucky as although I have a constant sore throat, stiff, sore, weak joints, dry eyes, skin growths and associated AI things like Lichen Sclerosis and Interstitial Cystitis I have no organ involvement.

I injured my calf muscles walking October 2020 but the leg has not recovered as expected and I suspect peripheral neuropathy or enthesitis both of which can occur as a result of RA but it’s the dam limp that gets me,

I’d like to hear more of your journey...