Stills disease

[Timmy45]

Hi, just wondering. If anyone has stills disease. I was diagnosed when i was two..i am 46 now. Still suffering!

[samie1999]

Hiya, my son is now 17 just over a year ago he was very ill for months and noone could figure out what was wrong and was eventually diagnosed with Stills Disease. After a long course of steroids, it seems to have gone hope it never comes back! There doesnt seem to be a lot of info on Stills Disease out there is there?!

[Timmy45 in reply to samie1999]

No and i have never met anyone with sd. I was discharged from hospital at the age of 12 but it came back when i was 19. It has been pretty resistant to drug treatment apart from steroids but they have left their own damage. Looking back i tried to never complain and put up with pain and flareups, not understanding that damage was being done. Have tried all anti tnf drugs and hqve for the third time been put on remicade and methotrexate,

[BoneyC]

Yes! I was 6 when diagnosed with Still's Disease, now 50, had it 43 years. I'm still suffering too, mine has been slow but destructive. Did you have A.C.T.H. steroid injections 3 x a week?

[Timmy45 in reply to BoneyC]

Just remember knee injections at hospital and an orange tablet called salazapirine ..i think. Discharged when i was 12, but it came back when i was 19. Tried loads of drug combinations. Main damage was done when i was trying for family and off drugs or waiting for reviews. Have new hips and knees. Feet destroyed as well. Just part of life. Tiredness nearly worst than pain.

[BoneyC in reply to Timmy45]

Never been discharged from Consultant, been told I have the worst form of the disease (destructive) and was one of the first to go on MTX (about 16 then) which took for over 30 years. Also tried loads other drugs. Can remember Benoral, a disgusting tasting, thick, white, liquid (similar to Milk of Magnesia). I had bent small fingers when diagnosed and toes overlapped then, so probably had it either from birth, or soon after. Hospital put me in wooden knee splints which I remember later modifying as cricket bats!! Also have had 3 THR's & neurosurgery to fuse C3-C6. Next year embarking on radial head excisions & new elbows if that doesn't work, and new shoulder joints. All joints deformed and painful, drugs don't seem to work as well as they used to, or maybe that's because my whole body is knackered! Can empathise with the fatigue, some days can't motivate to do anything. However, managed to work for 22 years & have 2 healthy children.

[vicki71]

Hi I have adult onset stills disease, got diagnosed 5 years ago. on enbrel and mycophenalate at the mo. seem to be doing better than i was but still cant manage much. how does it affect you?

[Ailsa-NRAS Partner NRAS]

Hello

Still's Disease can refer to Systemic onset Juvenile Idiopathic Disease or Adult Onset Still's Disease. You will find information on JIA in the JIA section of our website and there is also an article on Adult Onset Still's Disease on the website - here's the link: nras.org.uk/what-is-adult-o...

If diagnosed with JIA as a child, it doesn't turn into RA as an adult, it remains JIA all your life. I hope this is helpful

Best wishes

Ailsa

[Ee70s]

Hello to my stills family,I have had stills for 9yrs,maybe we could compare our story's and treatment?I am a member of the stills group in the states but have never met anyone in England with it.We are the chosen few.Was given stills at the age of 34yrs and have had many lows not so many highs.Had to give up my job as spent so much time in hospital,loads of tablets and treatment.Maybe we can talk?Take care all.E x

[vicki71 in reply to Ee70s]

Hi i also had to give my work up. very devastating. I believe there is only a handful of people with stills in east anglia where i am. i also have been and still am on many concoctions of meds. finally found a pain patch that has made things a little easier. what meds are you on? hope your not too bad at the mo. Take care.

[Ee70s in reply to vicki71]

Evening Vicki,sorry I did not get back to you earlier,had my treatment on Tuesday and it always leaves me shattered.Dont you just hate the fact that we had a life before Stills yet it just seems such a degrading disease.Just because we look normal(whatever normal is)people just think we are lazy and can not be bothered to WORK!!! Drives me mad haha rant over.Well looks like you may have found someone near to you?unfortunatley I'm down on the south coast near to Brighton,would love to meet up with a fellow Stiils family member.Hope we can share our stories when the weathers on our side and join finger pains don't stop movement.Take care E x

[vicki71 in reply to Ee70s]

Hi Ee70's. thanks for your reply. unfortunately i have to walk with two crutches or i wouldn't get around at all! i tried mxt injections but it did nothing for me. now im on embrel and it has been great. i was getting pericarditis and pluracy nearly 3 to 4 times a month. but it has stopped that only had two flare ups in two years! It doesnt however take the pain away or stop me being so very tired. im also on pain killer patches because i got used to morphine and it stopped working for me. anyway i hope you get to meet up with someone near you. would be good to chat. take care. vicky

[Hidden in reply to Ee70s]

If you’re still active on this site I’d like to chat?

[CJH86]

I have adult stills, also in east Anglia oddly! Had it a few years now since my early 20's... its nowhere near controlled currently. On MTX 25 injections, colchicine and a lot of prednisolone at the moment. :\

[Ee70s in reply to CJH86]

Evening to you.I am sorry you are not on Meds to help with controlling,don't know if we will ever be!!seems to be so different on days then the other.I have just learnt to take each day as it comes and ALWAYS remember I control Stills NOT it controls me!!! Wish you luck and you know where I am if you need to rant lol.Take care E x

[CJH86 in reply to Ee70s]

Thanks, its all a bit of trial and error it seems! I like a good rant so I might have to take you up on that one lol. Sure would be interesting to compare our stories x

[vicki71 in reply to CJH86]

Hi CjH86, hope your feeling not too bad. if you don't mind me asking how old are you? you said you have had it a while, i am so sorry your not getting the right treatment, why don't you ask about embrel and other options next time you see your consultant. anyway its nice to hear from someone in my neck of the woods(so to speak!) hope you get more relief from your meds soon. take care. vicky

[CJH86 in reply to vicki71]

Hi, I'm 28. My consultant upped my prednisolone to 40mg last week so I'm getting some temporary relief which is always good they are also seeing me next week again. I know they suggested anakinra which they seem to have high hopes for but I'm told I have to fail a 2nd DMARD before hospital can fund it. I don't think there is any general consensus on treating stills!

There is a lot of strange quirks about this illness that I cannot get my head around! I think that might be my mentality though as I'm a medical professional. I am still able to work a couple of days a week at the moment, but its a struggle to be honest. People do find it hard to understand!

Caz

[Timmy45 in reply to CJH86]

Hi caz, i am amazed at the different responses since i posted asking if anyone had stills. We r not as unusual as i first thought! Mine was diagnosed as a child. Treatment has been complicated due to me trying for a family. However when i stopped and concentrated on my health it was difficult to find a drug i benifited from. Prednisolone was given at high doses 40 mg dropping to 20 mg when i felt well. My doctors tried enbrel, humira, retuximab, toxcilimab etc. i have never been put on anikira. Remicade given six weekly with 25 mg inject methotrexate and 7.5 mg pred has stabilised me at present, but i am sooo tired. One of the probs i found was when on high doses of prednisolone i was never sure if when i was given a new drug wether it was working. It took a number of months to lower the dose and then c if i was benifiting. Have developed severe psorasis as a result of the remicade but pushing on as the dr has said i am running out of options. I am 45 now and living in Belfast. Time has flown!! My advice would be make the most of your appointments. I feel that i put up with a lot not wishing to seem like a complainer and caused lots of joint damage. Pace out your day. Stay working! It is a huge effort to get there, but worth it as you can put your illness out of your mind. I stuggled for 17 years finally forced out due to closure of business. I am housebound now and feel the old saying is true. The less you do the less u can do! Regards. Brid..

[Ee70s in reply to Timmy45]

Hello Timmy45,

It's funny how we put our trust into our specialist Doctors and Nurses and it always seems to be that they know as much as we do!we do end up taking so many different tablets and treatment because it's all try and error.I myself have spent a lot of time in hospital with my uncontrollable flares,last time I was in hospital with flare I spent 5wks there and could nt even go to toilet myself went down to 6stone from 8.5 .Steriods is the answer to the problems which we just have to take more of then we have really bad joints.I have just been for a full body bone scan which something has been shown up,now have to wait 5wks to meet with Dr and discuse next step.Just put a smile on my face and get on with it.Lets hope for all us Still peeps and the next generation that they find a magic pill,haha.Head up and keep smiling x.E

[Hidden in reply to CJH86]

Hello fellow Stills sufferer, I’ve just found you, if you’re active on this site I’d like to chat? Interestingly in in Cambridgeshire!

[samie1999]

Oh no, this Stills sounds worse than I originally thought, sorry to hear all you poor people are suffering, ive got Psoaratic Arthiritis and thats bad enough, I hope Stills NEVER comes back to my son!!

[Ee70s in reply to samie1999]

Samie,sorry to here you are poorly too,and yes I hope your son never has it back too,seems to be more women then men but maybe cos we like to come on to sites and meet people with like minded symptoms to discuss and find out more.Take care E x

[cockney0154]

hello my name is steven i have adult onset of stills disease which got when was 36 i have had allsorts of drugs and now on 20mg of steroids and 1500mg of mycophenlate i have had two hip operations and now seem too be getting worse i have had this disease 5 years and know it is not going to get any better but try to keep a stiff upper lip. aaaaah the pain

[Hidden]

Fellow sufferer of Stills Disease, it would be good to chat?

[nomoreheels in reply to Hidden]

You've probably read Timmy45 profile & seen she's not here too often. Others I know of with Stills are Hope7777 PM193 Foxgloves64 Deb89 NoraY92 Stillstandingup & Joang has a niece who has it. None are regularly active members but worth trying to PM them nevertheless, you never know. There are a few more but it's a long long, time since they were here. I hope you manage to contact any of them. It can be lonely when you don't know know anyone else with what you have.

[Hidden in reply to nomoreheels]

Thank you and happy new year to you 🎉