Help with stills disease

Hi I have been recently diagnosed with adult stills disease don't know if anyone can help just so much to take in I started with a rash on chest around 10 weeks before xmas went all over so went docs said allergic reaction gave steroids 4 3 days an anthistimine told go back if didn't go the only other things were I felt tired and have been stressed along time at work had a couple of ops disc replaced in neck an shoulder arthroscopy but otherwise fine then around 21st November ad been away for week felt fine went back work handed my notice in so chuffed got new job shud av started Jan when I went back rash came back in afternoon with cold but this time different not itchy an was aching in joints joked I was allergic to work this happened again nxt day around same time and next day awoke no rash but felt awful went docs said chronic uticaria thought bought on by cold sent for bloods as I sat waiting my knee doubled in size and my ankle I could hardly walk struggled to even walk round house went back docs said he thought I might have lupus needed to see a rheumatologist he said he ad got me a bed up at the hospital my bloods were on red alert so much infection an inflamtion but after 4 hours in a n e no bed was sent home in agony managed get appt paid private see a consultant who said he needed to get me admitted to a specialist hospital but he thought I had stills disease the next day I got a call an true to his word he had got me a bed an they were fantastic I spiked a fever that afternoon an all the time I thought I was cold they said my temp was 42 I was dehydrated and my veins had closed up couldn't get a cannula in so jus had to drink loads of water they said how I hadn't fitted they didn't know this happened again in the night an fir the nxt week they then said my liver was playing up an also thought I had an infection so was moved in room on my own they said white cell count was really high were struggling what to give me with the liver then they I said my throat was hurting was having probs swallowing they noticed enlarged lymph node in neck so sent me 4 ct scan an they found enlarged lymph nodes in chest tum under arm an groin so they said need get a biopsy to rule out lymphoma but said it's also part of stills but we're struggling to get biopsy done with it being xmas was allowed to come home 4 xmas good behaviour an finally started on steroids also steroid drip given so joints seemed great even thought they had got it wrong for a min felt norm but if course didn't last lots better than when I went in and good news haven't got lymphoma they then injected my wrist ankle an knee and started me on the methertrexate but said I have been different to any other stills patient they have seen I just didn't seem to respond an so I was in a month they have said im doing so well at mo because of sll the steroids ive had but they are now trying to cut them down but will another 12 weeks so its hard cos while i feel good they said i good go right back to hardly walking or being able dress meself so they are talking bout applying for funding for anakinra jus in case i need it Just all so hard to take in I have gone from being a normal 47 who enjoyed going out having a good time walking miles to someone who within days could hardly walk ended up in hospital 4 a month thought had lymphoma had to have aids fitted round home just in case I need them an now can't even get sick pay cos id handed my notice in 3 days before was taken ill so now on benefits gotta to laugh even my manager said that could only happen to you at least new manager as been brill an kept job open for me but can't even give them any idea when I can start going see consultants in 5 weeks hope to find out more because no one seems to know much about stills is there anyone out there who can help

18 Replies

  • All I know about Still's is that it's a form of arthritis, and is treated a bit the same way rheumatoid arthritis is with steroids, DMARDs and biological drugs. So hopefully like with the disease I have it's completely evil to start with, but once you get on the right treatment it is manageable. When I was first diagnosed I could barely walk to the toilet, and now I'm fairly normal again.

    Since it's a type of arthritis, have you tried calling the arthritis case helpline 0808 800 4050 (10am - 4pm weekdays) or looked on their website if they're anything like the RA helpline they'll be great.

  • Thanks so much for replying it was lovely to hear from someone else can I ask what you have an I will ring the helpline number will let you know thanks again for your help

  • There's quite a lot of information on your condition on the NRAS site and from Arthritis Care. Have a look.

    I would encourage you to read as much as you can about it and to make a list of all your questions.

    Keep a diary of your symptoms and take photos of your joints.

    And it would help us on here if you could put some spaces and punctuation in your posts - I found your post quite difficult to understand on first reading.

    I'm sure you can get some support and help if you do this.

  • Thanks so much for your comment will try what you said and will let you know how I go on.

    Thanks again for reply

  • Dear Bunker1

    Sorry to hear about your experiences. We have an article on the main NRAS website on AOSD

    Hope this might be of some help. It is much less common than RA but there are some rheumatologists out there who have more of an interest and knowledge/experience of this condition.

    Good luck and hope things improve for you.

    Ailsa, NRAS CEO

  • Thanks so much for reply it was useful and if you see anything else would appreciate if you can send it to me.

  • Hi, I also have still's disease and have had it for a couple of years. I now take anakinra, methotrexate injections and prednisolone (which I'm slowly reducing). Anakinra has been brilliant so far. Feel free to ask me any questions:)

  • Hi thanks for reply hope you are doing okay,omg where do I begin I'm only on my 4th week of methotrexate had my 1st bloods done go back this week for 2nd lot of bloods on 15mg doc said want to up dose as quick as they can but whilst in hospital had so many steroids an steroid drip an then they injected the 3 joints which were swelling the most. I don't know what to expect an I know everyone is different but I'm loads better than I was but doc as said they think I'm only this good cos of all the steroids an they are reducing them to zero over next few weeks how do I know if the methotrexate is working or is it mainly the steroids ? They have also said that I didn't respond in hospital like anyone else they have had in with stills an the doc on the ward said that the consultant is thinking that the methotrexate might not work an is thinking about putting in for the funding for anikinra. I supposed to have started a new job in Jan I am still off work an even though I'm lots better really can't imagine going back work yet I see my consultant 5th of February suppose he will advise me just hard when up until 23rd of November I was fine then 2 days later could hardly walk. Can I also ask do you still swell up I notice I swell normally as day goes on and have noticed if I get stressed. Any advice tips or help you can give me would be so appreciated Thanks again and look forward to your reply.

  • Hi hope you are ok am so sorry to ask you but the last post you sent yest I have tried but it won't let me read it only the first bit don't suppose you could try an send it again

    Thanks again


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  • Hi Caz how are you hope doing ok jus thought I'd let you know been see my consultant was pleased said my inflamtion come down loads from when I was in hospital but I asked why do I feel alot worse these last 2 weeks an it's the exact same joints knee,ankle,wrist that are swelling up again an my face an neck, I wondered is it because like the docs said in hospital you will feel great on all these steroids an then will probably go back down as they reduce but consultant said looking at my bloods he thinks the methertrexate is working an the steroids are causing the swelling which I do think in my face an neck but I said what if I continue to feel worse but bloods ok he said we'll see.He as also said with he thinks tablets upsetting my tum he putting me on methertrexate injections starting next week I asked if we dud find the methertrexate doesn't work was he still considering putting in for anakinra he said he can't if at moment because my bloods are ok but he will get the paperwork ready in case. He said not to go on my jolly to Malaysia in may I did think he probably would an I said well I swell up normally with it being a long flight,gutted cos it gives you something look forward to an feel so bad for boyfriend an mum an dad cos I kniw they were so looking forward to it, asked about when I can go back work he said 3 to 6 months before he will know must admit I wasn't expecting him say that long but like he says he doesn't know yet about treatment so whether they will keep my job open for me because it was a new job that I should have started Jan but no good getting meself stressed out have ended up on happy pills when I went docs this week never had them before must admit was a bit reluctant to take them but hey if they take the edge off things. Must admit not looking forward to injecting meself but if it's better then I'll give it a whirl going back see consultant in 6 weeks. Jackie

  • Hi Caz

    Just wondered if you are ok and still on the anakinra. Just thought I would message you as you were so helpful before. I'm still on the methertrexate 20 mg and 10 mg an 5 mg steroids bloods are doing great and consultant says he's happy that my inflamation as come down so much an bloods are normal, but I have recently been getting rash every night not itching an gone by morning have taken pics he thought it was the doxycycline they put me on for rash on face but 4 weeks now since stopped taking an still getting rash feel cold an joints really off. Rang his secretary and she spoke to rheumatologist and he thinks having flares also the fatigue seems to have got worse and can't seem to remember stuff. I did say I noticed I started with rash around last 6 weeks and that I'd been getting stressed because the new job I should have started have been ringing and then had telephone appt with occupational health and they said they didn't think I was fit for work yet but the bank have put me on a formal warning and said they will terminate my employment by the next sick note which is the 16th July I did ask about going part time and they said I might be able to but at moment it's hard because some days I think yeah I could be in work today then another day I can't even contimplate it either the fatigue or joints feel so weak and hurt feel like on fire some nights seem to get worse as day goes on. My right shoulder which I nearly had operated on 2 years ago but they gave me injections an then it went into left shoulder as kicked in it started to hurt when I was in hospital with the stills but was in so much pain I thought it was the stills in my shoulder it eased for a while but as got loads worse keeping me awake at night and affecting me driving and doing everyday stuff getting dressed so sent me see consultant and was going to inject it again but when he realised I'd had 3 injections he said tear as got worse and the tendinitis isn't going to get better so he advised operation. Just feel so frustrated consultant says he doesn't think I'm up to full time work and maybe part time in future but thinks banking may be too stressful for me and suggested perhaps see about another career, whilst I agree with him I'm so scared that if tgey finish me who will want to employ me as they gave said stills is classed as a disability and gp as said he thinks it will be to stressful at moment for me and he said have I thought about trying for disability as I said it's hard never been on benefits before and boyfriend is working so hard which then makes me feel more guilty. I know I have got to try and stop getting stressed about job just hard when I've always worked full time if only I could do something from home. I am going to try and think positive and hopefully stop getting flares and to get used to good an bad days and get shoulder done and like boyfriend and doctors have said got to focus on getting better and then hopefully think about maybe a new career or something.

    I do hope you are doing alot better would be lovely to hear from you as you were so helpful in the past and if you have any tips would be great

    Take care Jackie

  • When I started methotrexate I went from 15mg to 25mg very quickly then started reducing my steroids from 30mg-0mg I tried slowly reducing and it became pretty obvious it was the steroids that were masking my symptoms and not the methotrexate .... I would flare a day or two after every reduction, temperature would yo yo and things would swell up! My stills hasn't responded as expected either but from my research It seems the majority of people with stills disease do not fully respond to methotrexate, but as its fairly cheap and its been used extensively its a good option for first line.

    I still work but alternate days so I get a rest in between! I'm very lucky my job allows this as I wouldn't be able to manage otherwise. One recommendation... I was hospitalised with (very very) high BP before Xmas....I was never worried about my blood pressure as I'm only 28 and neither was my gp who never checked it! but steroids can rarely put it up so to be safe make sure you monitor it via GP/practice nurse etc

    I keep a diary of my temp, rashes and swollen joints which is useful as helps me keep an eye on things and my consultant also. Luckily I've been on anakinra a month and I have not had any massively swollen joints, only a rash and fever once I also have been able to reduce my steroids to 10mg so definitely recommend anakinra. I do swell up (not as much now) as the day goes on, especially around my knuckles and knees.... not 100% sure if that's water retention from the steroids or the stills in my case! If I get stressed I rash up, get flu-ish, hurt and my temperature starts climbing....there's no doubt about that!!! Also If I get too tired my lymph nodes can swell and throat hurts plus all of the above,! Its important to know when to rest otherwise we do pay the price.

    Mine also happened literally overnight , I woke up and couldn't move one day! The hospital though I had meningitis initially

    I would just as another point.... make sure you have a good GP! I have had some bad experiences and some bordering on dangerous. If you think something's not right please push it until you are listened to.

  • Hi thanks so much for your reply hope you ok and have had a good weekend, just so nice to hear that I'm not going mad an even though I know there are other people out there with stills just to be able to chat with you an know that although we may not have all the same symptoms know that you understand .

    Glad you mentioned blood pressure I will ask gp.

    I wondered how hard it was for you to get the funding for anakinra because when I was in hospital the doc who injected my joints with steroids said my consultant had said to him that he doesn't think I will respond to methertrexate and was already thinking about applying for funding but then with it being xmas he was on holiday mentioned it to the doc who said I could go home but he said methertrexate is very good and works for lots of people, I hope that it will work but I'm still on 30mg of steroids and as you know can't take them off that quick so going take 10 weeks to go to zero. I bumped into the doc who did injections when went for bloods and he said that consultant wants to up the methertrexate as quick as possible on 15mg now but still having flare ups no rash but joints swelling not as bad as when went in hospital but the tiredness almost feels like jetlag without the holiday he said that they are still going to talk to me about anakinra when I see consultant. I took a picture show my gp of my face an neck that swells all round my lymph node I can't imagine coming off the steroids completely I know they are no good long term but I'm scared that I will be like I was before but at least I was in hospital then. My friend got me a diary to write my symptoms in I go see the consultant who I saw in November next week is there anything you think that would be useful to mention or ask him I'm still off work have been off since came out of hospital new year and doc said that it wont be quick you will be off probably quite a while although it's hard to manage at the moment without sick pay I can't imagine going in especially with it being a new job really don't think I would take the training in because having trouble concentrating an remembering stuff at moment don't know if that's all the drugs or the tiredness because I don't sleep on the steroids still on sleeping tablets,I have tried leave them off but no matter how tired I'm awake all night then just feel awful all next day and wouldn't be much good to new employer especially as don't want to make mistakes and even though it's the same job as I did before as a bank cashier I know that I really couldn't cope at the moment and that's not like me normally I would go work even when I probably shouldn't have.

    I had ibs before but I wondered if you know if the methertrexate can affect ibs because it seems really bad the days after I've taken it.

    I can't believe you are only 28 I'm finding it hard to come to terms with and I'm 47 I'm trying to think positive and think that I will be not perhaps like I was before but at least loads better,my friends said trust you to get a rare disease that hardly anybody knows anything about never been 1 to do things by halves.

    Thanks again for your reply and sorry about all the questions you will be wishing you never replied to me but anything you can share or even if you just feel like having a good moan or chat.

    Thanks look forward to hearing from you


  • I had no issues getting funding for anakinra. It took about 3 months though as it has to go through the hospital board then the local clinical commissioning group ....who only have a meeting every 8 weeks in my area. I got funding first time luckily.

    I've been on steroids pretty much constantly for about 2 years now and I went down to 7.5mg this week without too much of a problem - before starting anakinra I couldn't reduce below 25mg. It got to a point me where the side effects of the steroids were as bad as the stills disease....I put on 3 stone, got spotty, skin was splitting, had insomnia, indigestion constantly, racing heart, bad mood swings, muscle cramps, hot flushes, sweating, constant hunger and high BP.

    Are you injecting methotrexate or using the tablets? The tablets can upset the digestive system. The injections bypass it so not as much. Saying that I still feel like I have a hangover for a day or so after the injection! Mention it to rheumatology, they might advise more folic acid.

    I get the swollen neck nodes, mine tend to go up in the middle of the night.... makes me look like a hamster. Let us know how your apt goes!


  • Hi thanks so much just let me read it omg I think we cud b twins obvious me being the younger 1 loads of our symptoms an stuff sound the same but of course you had stills alot longer than me, the insomnia,fatigue hamster face. Glad the anakinra is working 4 you I'm on 25 mg of steroids at mo and can tell I'm getting worse still on zoplicine sleeping tablets and every time I try leave them off I don't sleep even a hour so now think I'm hooked on sleeping tablets until I come off steroids will be in touch after I've seen consultant.

    Thank again Jackie

  • Hi Caz

    Consultant secretary rang back today as I had rang for advice as since I've upped the methertrexate to 15mg tablets last week I have had an upset stomach I already had ibs but thought better mention I'm going the toilet around 20 times a day an feel like I've been wrung out like an old dish cloth, she said consultant said could cut methertrexate back down and mentioned I think she said sub cuts do you know wot she means I wasn't sure if she meant injections but I said I can discuss with consultant this week any other questions or advice you can give me that I can ask consultant would be useful but don't worry if you can't hope you have had a good week an thanks for all your help

    Thanks again


  • Hi Caz

    Just thought I'd check see if you ok hope you got my last post after I'd seen consultant only been having some problems where messages going missing with site. Let me know how you doing hope you still ok. They have put me on methertrexate Injections but not sure if it's the injections or coming down on steroids on 20mg now have really felt the fatigue an felt sick even thougt I'm on anti sickness and swell up in all the joints I had injected but not as bad as they were before but they had also took fluid off knee said to up folic acid like you said they said my inflamation come right down and every time I go for appt joints seem down and they keep saying you look good which is nice but I said it gets worse as day goes on sometimes feel like they don't believe me don't know if you felt same did your inflammation and not sure is it crp and esr come down but you felt crap. Hope you don't mind me asking you only your the only other person with stills who seems similar hope you ok

    look forward to hearing from you


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