ADULT ONSET STILLS DISEASE

Hi

I was diagnosed 6 months ago with adult onset stills disease. Being a very active 40yr old it was a bit of a shock as I went downhill overnight with this condition. After 2 weeks of being really poorly I was admitted into hospital for what seemed like 1000 tests. Thanks though to a fantastic team of consultants in rheumatology and 14 days of test after test after test I was diagnosed. I feel very lucky as I understand that some people suffer for months with no diagnosis. I am now on methotrexate injections and steroid tablets as well as steroid injections which have kept my symptoms under control, although I still suffer with mini flare ups and have to wear splints on my wrists my life is slowly getting back to normality. I thought I would try this site to get into contact with other sufferers of this condition. I would like to hear from other sufferers as I know this condition is rare and it would be good to chat. Thanks

11 Replies

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  • Hi there - Havent a clue what stills disease is but glad you have a diagnosis and the 'drugs' are working and you are 'getting back to normal' Seem to use methotrexate for lots of things these days x

  • Thanks for your reply and well wishing. I came across this site and thought it would be a good way to get in contact with people who have the same condition as me. Are you on methotrexate as it seems to help with so many conditions x

  • Hi purplewolf40,

    Sorry to hear about your recent diagnosis but pleased that you have found this site as there may well be a few people on here with the condition. . We have a small section on our website on the condition (as it has similarities with RA, although rarer) which you may find helpful: nras.org.uk/what-is-adult-o...

    A lot of RA medications are also used for AOSD and the general hints/tips on here are often helpful for anyone with an autoimmune condition or similar disease, not just RA.

    If you need anything further, do give the Helpline team a ring on 0800 298 7650 (9.30-4.30pm) or email helpline@nras.org.uk

    Kind regards

    EmmaS-NRAS

  • Thank you EmmaS I will make sure I take a look at the nras site as there does not seem to be a lot out there for aosd. Hopefully I will meet other people with it on this site. X

  • Hi, I was diagnosed with Still's Disease as a 6 year old, but over the years (44) various Rheumatologists have told me it developed into RA, and that I probably started off sero positive and now I'm sero negative.

  • Hi

    Sorry to have taken so long to reply, I am very bad at getting back to people :) Thanks for your reply and it is nice to hear back from someone who has this disease as I still do not fully understand why or how I came down with it. Are you on treatment for the RA, I know they use the same types of medication to treat both? I hope this message finds you well x

  • Hi, That's ok, I've been on treatment (steroids, DMARD's, NSAID's & pain killers) the whole 44 years. I don't think we'll ever know what caused it, but I would be interested in having my DNA analysed along with my mother.

  • Hello, I was diagnosed with AOSD 9yrs ago. I have other health problems. I'm on steroids and Enbrel injections, and hydroxchloroquine. i was having Forsteo injections every day for 2yrs, which you can only have for 2yrs in your life time. I'm having a Dexa scan on 30th to see if they were any good. Hopefully will be put on an injection every 6mths. I very rarely have a flare up. I've had a hip replacement and broken wrist. My mobility has got worse, I'm in a wheelchair now, when I go out.

    Take care

    Ann

  • Hi

    Sorry not to have replied to you sooner. Sorry to hear about your decrease in mobility and hope this message finds you well!! I seem to be having problems stabilising on my meds but I know it is only early days for me. I am being changed over from meto ject to Azathioprine as I was having bad side effects and having trouble reducing/coming off the steroids. Trying to find out as much as I can about the stills disease and there does not seem to be much out their about it, apart from on the Arthritis sites. I still do not fully understand what brought it on and the long term effects. I suppose everyone is different. Any advice or information you have would be greatly received. Take care x

  • Hi not nice for you but glad there are more of us out there I was diagnosed at 47 with aosd and probably like yourself had never heard of it and my first reaction was what the hell is it and panic mode then I was relieved just to know I wasn't going mad and I had a diagnosis. Mine came on almost overnight had been stressed at work and started with a rash but it would come and go would norm appear at night and morn but then nothing ended up taking pics to show doctor then my joints especially wrist, knee an ankle hurt and felt weak then was freezing cold but sweating in the night almost like flu symptoms doctor thought urticaria and thought bought on by the cold my boyfriend laughed said trust you to be allergic to cold but sent me for bloods and my inflamation was off the scale then my knee ankle an wrist just swelled up overnight and could hardly walk I was lucky and managed to see a fab rheumatologist and he said stills disease was 99 percent sure and was getting me a bed at hospital got me 1 next day and it turned out I wasn't cold I was spiking fevers and I was dehydrated they needed to get a canular in but couldn't as my veins had all closed up I was given high doses of steroids and a few weeks later a steroid drip and they injected my joints with steroids they couldn't put me in methertrexate at start because my lymph nodes were swollen an had to rule out lymphoma but thank god it wasn't and after a month was given methertrexate the tablets but they didn't suit so am now on 20mg injecting and sometimes makes me feel crap tge next day but think as helped lots but until I can come off the steroids won't know completely I'm only on 4mg a day now but taken so long been on them over a year and have put nearly 1.5 stone on and stomache is huge but at least I don't have the moon face I had earlier in year. I'm lots better but it is hard and the fatigue and joints do get you down have ended up on antidepressants and sleeping tablets and not working as I was due to start a new job when I was taken ill but the doctor thinks too stressful and said it's not worth getting all stressed and going back down so now I just take each day as it comes try to do stuff when I can and try to rest up as it takes it out of you. Can I ask you if you had any if tge symptoms before because friends have said that over the years most years I have had what seems like bits of the symptoms and they used to say it was a viral infection and after about a month it would go but you do wonder and think wonder what causes it's hard cos being so rare nobody to really ask

    Hope you are ok at mo and stay in touch because it's nice that we can message on here going for my bloods later today hope inflamation not raised as I would love to come off the steroids but if they help then sometimes gotta take these things they have suggested anakinra but it's a biologic and would have to try get the funding but doc said at mo wants to leave it to see if I can come off steroids because he thinks they would refuse him the funding at mo hope I don't have to have it would have to inject daily si keeping everything crossed have they mentioned it to you.

    Take care and let me know how you are going on

    Jackie

  • Hi Jackie

    Sorry not to reply sooner (rather useless) The start of mine was just strange really. On a Wednesday night out of nowhere my left ankle swelled up and was agony but by the next morning swelling had gone and was just a little stiff. That evening my right ankle swelled up and my throat and jaw were sooooo sore I could not talk. Friday morning woke up covered in a rash and so went to doctors. Had blood tests and sent home. Over the weekend I just got worse with every joint swelling and just aching from head to toe with a raw throat. Temperature rocketed every afternoon and nothing would bring it down so doctor came out to me. More blood test and he suspected RA. When my blood tests came back the inflammation markers were off the chart and by now I could hardly walk. He phoned the hospital and I was admitted. I was in for 2 weeks having several blood tests daily and everything kept coming back negative...I was a mystery. They then started testing me for things you can only get abroad, It was then that a rheumy consultant noticed my ferritin markers had been high. She came in and explained that it was highly doubtful but Stills could be causing it, she explained how rare it was. They then checked my ferritin levels again which came back at 3000, but she still wanted to rule everything else out so more blood tests but as everything else came back negative and because of my symptoms she was 100 percent sure it was. So I started on 50mg of steroids daily and methotrexate. Due to side effects with the methotrexate and then the meto ject and still getting symptoms, the rash and joint pain etc they changed drugs. I am now on Azathioprine and have just managed to come off the steroids and symptoms seem to be under control apart from having that dull ache all the time (I can cope with that) so I am taking one day at a time and getting on with my life. Back to work and also back doing Reiki which I am sure is helping. One thing though is the fatigue I get tired a lot easier than I ever did and some days just have to lie on the sofa and go with it. I hope this email finds you well and you are getting on with your meds ok. I promise to be better in my replies in future.

    Also I was told that as a child I may have had signs of this....growing up I had trouble with my ankles and had to see a specialist who had no real answers for me and also I have always had trouble with my knees, they would swell and go black, had xrays and scans but no answer and funnily enough since taking my medication my knees have settled and not been bruised at all...kinda makes you think, will we ever know though. I am just thankful that my consultant and her team are amazing, can not praise them enough. And my mum has always said my immune system was wonky as I would get viruses that most people would fight off easily and I never seemed to.....just coincidence who knows.

    Let me know how you are getting on sending hugs your way

    Steph xx

    ps

    I put on over a stone and found it hard as I looked in the mirror and just did not recognise myself but hopefully now off steroids(been 4 days) it will slowly go and pps splints have helped my wrist and hand pain a lot.

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