Anyone out there with Adult Onset Still's Disease?

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  • BeckyH
    BeckyH Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi all.. I'm so glad to have found you! I'm currently 'under investigation' for AOSD and some aspects of your stories sound so familiar. For most of 2009 and 2010 I was waking up at about 2am with dreadful nightsweats, I had UTIs, constantly recurring thrush (in my mouth too, which was awful) and an almost permanent sore throat. I was - and still am - utterly exhausted. In June 2010 my skin erupted - three GPs couldn't diagnose it and nothing helped.. I had purple blotches all over my legs and elbows and pink spots up my arms, also a bright orangey-pink rash on my chest that just seemed to appear and disappear randomly. Anyway, GP was hopeless and my 'urgent referal' to dermatology turned out to be me reminding her several times to write the letter and a five month wait.. By the time I saw the dermatology clinic everything was clear and all I had was photos. Anyway, my dermatologist really is fantastic and has run just about every test under the sun..all are negative apart from a raised lupus anticoagulant (which isn't lupus - it's an indicator of a clotting disease called antiphospholipid syndrome..something else to add in!!) and bizarre skin biopsies showing something that's closely liked to underlying autoimmune diseases. As I've also been getting really painful twinges in my knees and fingers, have a chronically sore shoulder and gastrointestinal symptoms, she thinks it might all add up to be AOSD. I'm seeing a consultant rheumatologist at St Thomas' Lupus Clinic in about a month and don't know what I'm more worried about - getting the diagnosis or being told again that there's something wrong but because I'm not flaring, they can't tell me what.

    Apologies for the life story.. I'm just so frustrated! I seem to have been feeling varying degrees of 'meh' forever and no-one has an answer..

    Thanks for reading.. Becky
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Becky,

    Really good you found us, it certainly does sound like you have AOSD or something that is very similar in any case. As you've probably read on this forum already, most of us seem to have variants on the central theme of rash/sore throat/arthritic joints- I guess when its something as rare as AOSD is, its hard to draw parallels in every case. I guess you will know more, hopefully, after your visit to St Thomas'. You probably know by now but I don't think there is a test that can tell you definitively whether you have AOSD or not, you just have to be tested for everything else under the sun to eliminate everything else! And it sounds like you've spent the last two years undergoing just that so I'm sure you'll get a final "working" diagnosis soon.

    If it is AOSD, don't be disheartened - though I know that is easier said than done. What you read on websites can be so worrying but I'm convinced that most of it is made up by people who have perhaps seen it a few times and think they know it all! It's still entirely possible that it could a)burn out soon, or b) you'll be able to control it to a large extent with the right drugs. Of the people I've met through here and Facebook that have it, most of us are able to still have a life albeit just a slightly different one! I don't want to give you any false hope, as of course there are some people who do really suffer with it, but there are so many different drugs you can try.

    Keep in touch - I've found it so good to finally meet other people with this damned thing and know I'm not alone!

    All the best,

    Carol
  • BeckyH
    BeckyH Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Carol,
    So nice to hear from you! Although it's awful that each of us has sometheing 'wrong' (AOSD or otherwise), it's comforting to know I'm not the only one with this strange set of symptoms - I did know that AOSD can't be diagnosed through serology and it does make it all seem a bit 'unreal'. I guess I've always put my symptoms down to something else - stress (I have a terribly stressful job), depression, gynae problems, prolonged recovery from glandular fever (15 yrs ago!!), IBS.. It wasn't until my skin went nuts that I and my GP started to take all these things seriously. I still wonder if it's just 'a bunch of stuff' though - I even asked my dermatologist if she thought I was just a bit mad! 'Thankfully' my skin biopsies put pay to that little theory - palisaded neutrophillic granulomatous dermatitis..anyone else have this?? It's not the same as the rash we all seem to get here (the orangey pink one). Anyway..looking forward to seeing the rheumatolgist who I hope will be able to shed a little light on things!

    Keep well all.. Becky
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    How strange - can you describe the rash? Mine is weird (who's isn't!), it only appears in the evening and always in a different place, sometimes its only a patch and other times it will completely cover a limb or something. It's pink, slightly raised, spidery and on bad nights it will show big swirly patterns as if someone put a doily on me and coloured me in!! When it's a good night, most people think it is a heat rash, it's only on the swirly nights that they all go "wow what is THAT?!"!!

    I also had thought it could be glandular fever back again, which I had aged 16 and I'm now 32, and I still think AOSD can be exacerbated by stress even if it's not caused by it. So yes it does sound like there are similarities as well as differences. Well, it'd be boring if we were all alike ;-) X
  • BeckyH
    BeckyH Member Posts: 5
    edited 30. Nov -1, 00:00
    Hehe! Yes, it would be dull if we were all the same! My PNGD rash is very different from my (suspected) 'Stiill's rash'. The Still's-type rash comes on in the afternoon or evening for no apparent reason and is usually only on my chest, though it's been known to crop up on my knees or armpits after a shower (does that happen to you??) - only ever in the latter part of the day though. It's luminous orangey pink and patchy - yes, a bit like heat rash but not usually bumpy. It doesn't hurt or itch and lasts anywhere from 10mins to a couple of hours then just goes away. The PNGD is completely different - I've had small, flat patches of purple (almost like tiny bruises) coming and going for many years around my ankles, but when it flared a couple of years ago the purple patches appeared on my legs and my elbow joints erupted with raised pinky-red bumps about 5mm wide, which spread down my arms. Totally non-painful or itchy and numerous creams didn't touch it.. If you google Lupus, it was much like how a typical lupus rash is described. Anyway, I had a smaller flare same time this year and the biopsies said pngd, which is apprently only seen with underlying autoimmune disease. It's there all the time (not like the Still's rash) for weeks or months then resolves spontaneously.. It isn't treatable as far as I know, unless it ulcerates, then I guess they'd deal with that part of it. Very wierd!

    Interesting that we're the same age (I'm just 33) as my 'big' flare (which was nothing compared to what some people has described -no terrible joints pain, just muscle aches and joint twinges and no hospitalisation needed thankfully) happened a few months before my 31st birthday. I know this is a disease of young adults (though I'm so tired I feel ancient most of the time!!).

    How long does your rash last? Is it accompanied by fever? I read a lot about the spiking fever, but my night sweats stopped a long time ago and I have no idea whether the rash was around then as it was always 2am and my GP was wholly uninterested once he saw my bloodcounts were normal (bar boarderline aneamia, which wasn't treated and now isn't there!). *sigh* !

    Thanks you again for your replies - it's cheered me up no end to learn a little more from real people! :)
  • BeckyH
    BeckyH Member Posts: 5
    edited 30. Nov -1, 00:00
    Sorry..just realised I said something misleading about my pngd rash. It's not like a typical lupus malar rash.. If you look at the London Lupus Centre site it describes the most common lupus rash as pink spotty elbows.. That's what it's like! All tests for lupus (bar the anticoagulant antiphospholipid antibody test, which is different) have been -ve. Sorry if I confused things!
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Becky,

    Don't worry at all, is there anything about our conditions that ISN'T confusing??! I wish I knew more about PNGD, I will certainly look it up, but the Still's rash sounds very similar indeed. I've often wondered whether it would still come up in the evening if we lived in Australia - would it be morning?? It's a weird weird thing! Can't say I've ever had the "shower" effect, except that i love very hot showers so I always get out looking rashy and pink! As for the fever, well I certainly did suffer from that in the beginning in my big flare, and it did accompany the rash then, but now, no I never seem to get fever. But then I'm pregnant at the moment so my symptoms are very much in check at present. That's the other weird thing, why does pregnancy seem to have a positive effect? No doctor can answer that one. I haven't got any stiff joints (apart from the usual after a day looking after my toddler) and the rash is very small in just a few patches. It never lasts the night, it's always gone by morning, though if it was a particular bad rash then you can often still see redder patches of skin where it was.

    I can also totally relate to the normal bloods - how frustrating is that!!! Every time I see my rheumatologist he tells me my bloods are normal, as if that is meant to be some sort of good sign, but then my GP explained last time that they only check my bloods to make sure that any medication I'm taking isn't affecting my organs - apparently whether they are normal or not has no bearing whatsoever on my diagnosis or whether I'm actually getting any better. Great...! ;-)

    Anyway really pleased this is helping you, being able to talk about it. It was one of the best things I ever did, going on this forum, after almost 3 years of not knowing anyone else who could really understand. I have met some great people on this, and one in particular, Laura (you can find her on Twitter, she's called Stillslife and she's also on Facebook in that name too), with whom I am discussing the idea of setting up a proper patients' organisation to try to provide some sort of support for us lot. Watch this space!

    Take care and write anytime X
  • blaire1010
    blaire1010 Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi All-

    I'm Blaire, age 26, from New Jersey in the US, and I was diagnosed with Adult Onset Still's Disease this past March. I came across this forum this evening in a search to find others out there like me who are living with this chronic pain. My symptoms began in April of 2010 with stomach pains and cramping as well as extreme weight loss and fever. My doctors sent me for all kinds of tests - ultrasounds, endoscopies, colonoscopies, blood work, etc. Everything was coming back normal. The only indicators I had were high Sed Rate, CRP and white blood cell count levels. My symptoms began to progress in August of 2010 - my pain became so extreme and the lymphnodes in my neck and underarms became so enlarged that my doctors wondered if it were just a virus in my system that my immune system was fighting back against.
    From September to December of 2010 I visited all different kinds of doctors, and got all different kinds of "almost" diagnoses - anything from Thyroid Cancer to PCOS to Adrenal diseases. No one could figure out what was wrong. At the end of December I began seeing a diagnostic specialist who was convinced that I had Lymphoma because I had nightsweats on a daily basis, rashes, enlarged lymphnodes, and pain. I underwent a whole new battery of testing - MRIs, CAT scans, XRays, Scopes...needless to say, by the end of January Lymphoma had been ruled out. By this point I had stared thinking that my symptoms were all in my head and that I was going crazy. My life had been turned upside down by my symptoms, and I started feeling hopeless and helpless.
    Turning to my family and friends was always difficult because they truly didn't understand why I was so sick; for that matter neither did I. In January, I began seeing a Rheumatologist who was the most understanding and helpful doctor I had met yet. He decided we needed to take weekly blood work, track and journal my symptoms, and rule out things like MS and sarcoidosis. I saw a neurologist in February and underwent a brand new set of blood work. He tested me for something called Immunoglobulin levels, and it was discovered that mine were obscenely out of wack. Imunoglobulin levels are just one sign of auto immune disorders. Finally my Rheumatologist had something to go on, and he along with a team of his associates came up with my diagnosis. Here in the US, AOSD is very rare (as I am sure it is in the UK), and my doctors had never treated anyone else with it before. Once they decided on a treatment plan (of many different kinds of meds and suppliments), I started feel better progressively.
    Now, seven months later, my symptoms are beginning to return slowly. My joint pain is coming back, and so is the fatigue and fluid retention. This time though, I have a better understanding of what this disease is all about, and will hopefully have a better grip on treating myself. I want to thank all of you who have written in to this forum, because tonight as I sit here unable to fall asleep, you all made me feel like I'm not the only one who can understand what this is like. Wishing you all good health.

    -Blaire
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Aw Blaire, what a detailed posting, of your most difficult journey of finally being diagnosed. I felt for you so much and your last paragraph overwhelmed me:-

    Now, seven months later, my symptoms are beginning to return slowly. My joint pain is coming back, and so is the fatigue and fluid retention. This time though, I have a better understanding of what this disease is all about, and will hopefully have a better grip on treating myself. I want to thank all of you who have written in to this forum, because tonight as I sit here unable to fall asleep, you all made me feel like I'm not the only one who can understand what this is like. Wishing you all good health.

    You are one brave person and I totally agree it makes such a difference knowing that you are not the only one going through/having to live with this.

    I truly feel for all of you that have this particular form of arthritis, of AOSD.

    Please do join us on the forum, it is good that you found us. It is a great place to call in for a chat, a rant, help and support. Even if we cannot help you, I can guarantee, you will always receive replies to your postings. That is a promise. :smile:

    Gentle hugs
    Elna x
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Blair,

    Yes I completely agree with Elna, so sorry to hear about what a nightmare you have had. It's weird, there are about ten of us on this particular forum now and we all seem to have had wildly varying experiences of that first initial onset. But what is the same for all of us is that feeling of it all being swept from under our feet and total helplessness and that's what this forum is all about. I asked the original question if anyone else with AOSD was out there because I'd felt so isolated, despite my family and friends being so supportive. I still have so many questions that I doubt I'll ever find answers for but it is such a comfort to know that there are people out there who can truly understand.

    I am hoping to set up a new Still's Disease Patients Organisation soon and I've written to my rheumatologist to see how much support he can give. But it's probably going to be just a simple online thing to help people find one another and see if they can get some answers by looking at other people's war stories. I shall keep you posted! In the meantime, try not to get downhearted, one day this stupid thing will burn out, or they'll find some miracle cure - which reminds me, have you tried Anakinra? I was under the impression it was past the trials stage in the States and was having good results so far on Still's.

    Anyway, stay in touch and post whenever you need a chat.

    All the best,

    Carol
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Carol

    That is a wonderful idea, starting up a website for people suffering with AOSD. I truly wish you well with that. It must make such a difference being able to share problems and information and no longer feeling you are the only one in the whole wide world with this particular form of arthritis. Made even more difficult because it appears that many of the medics are not clued up on it. At least now there are a few of you to support each other on this thread on this form and I do hope that people call here every so often so that it does not get lost much further down the pages of this zone.

    Elna x
  • blaire1010
    blaire1010 Member Posts: 2
    edited 30. Nov -1, 00:00
    Thank you for your kind words Carol and Elna. I have a great support system in my doctors and family. Although my family doesn't always understand they still are there. My doctor has decided to keep me on steroids, anti inflammatories, and various other types of meds for my other symptoms. I will definitely bring up that treatment though. I will continue to visit and hope you all day well.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi blaire, I don't have what you have (and I am sorry that you have what you have, being rare and somewhat exclusive is not all it's cracked up to be, yes?) but a very good way for those around us to understand what we are feeling is something called The Spoon Theory. I advise you to google that, it is a very visual explanation of the ups-and-downs we all experience. I wish you well. DD
  • colinm
    colinm Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Carol and Blaire, hope you are both well.

    I'm Colin and I too have AOSD. Was diagnosed in 2007 after being as bad as needing to be admitted to an ICU. Doing fairly well at the moment but still get lots of pain in my upper limbs mostly but can be pretty much anywhere. Like you Carol I have a residual rash which is only present on the upper part of my chest just below my neck but it's really noticeable and I feel a bit self-conscious about it so cover up and don't go swimming (which would of course be good for me).

    Blaire, you need to be on Kineret (Anakinra) as it's been my saviour, miraculous is how I'd describe it. So much that when I don't take mine I can't function. Happy days at the moment but maybe troubled times ahead.

    Happy to chat more.

    Col x
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Colin,

    Now THAT's interesting, are you in the UK? I've only heard of one other person being prescribed Kineret so far in the UK and that was basically because she'd tried absolutely everything else to no avail so she finally got it on the NHS. I'd be really interested to know your circumstances on that, if you don't mind, so that i can go armed to my rheumatologist as he told me I'd have to fight really hard to get it. Do you have to inject it every day? I guess you get used to that but even after all those tests I'm still rubbish with needles!!

    All the best,

    Carol
  • colinm
    colinm Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Carol,

    Thanks for the message. I've now been on Anakinra for 3 years and 4 months. Was injecting every day but now every 36 hours but planning to try to get down to every 2nd day........I hated the injections at first but absolutely no problem now. It's been a miracle drug for me and I was at rock bottom after having regular immunoglobulin infusions and mtx. After I started anakinra I started to really feel a lot bettter within 48 hours!

    I live in Edinburgh and was the first in the region to be given it and there are another 2 AOSD patients on it too. They did have to go to the hospital drugs and therapeutics group and various budget holders to get permission beforehand though as it comes via a hospital prescription therefore the rheumatology department have to pay for it.

    On the attempts I've had at stopping it I go back to being really unwell again so it's really doing something! Please let me know how you get on.

    Take care

    Colin
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Thanks Colin, that's tremendously helpful. I'm pregnant at the moment so I can't take any drugs, at least until I give up breastfeeding (how long that will be will depend on how long before I break!!), and I suspect they'll have me trying all sorts of stuff before they'll consider Anakinra - but it's good to know there could well be a big light at the end of the tunnel! So will definitely keep you posted. Stay in touch in the meantime. Carol
  • EmmaL
    EmmaL Member Posts: 3
    edited 30. Nov -1, 00:00
    I would like to introduce myself & say hello to everyone!
    I have not posted for a long time because I've been busy having baby number 2. I was interested to see that a few people that also have AOSD have posted since I last enquired about others with this condition. I find it very comforting to be able to chat to others with the same disease.
    I was diagnosed in 1990 when I was 19. I am now 40!!!!
    I am just back on the Methotrexate following a flare. It's not working as effectively this time & I was wondering what other treatments are out there? I gather Anakinara is a good one! I have read a few of the postings here this evening & will take more time tomorrow as pretty tired this due to job applications & a house move!!!!

    Look forward to hearing from you all & chatting more!
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Emma good to hear from you! Congrats on Baby no 2, hope all went well! I am due in 8 weeks with my second too so I'm half jealous of you for finishing the pregnancy and half sympathetic as I know the craziness you'll be living right now!! It's very interesting to meet someone else who has Still's and has managed to have kids - did you find the pregnancy helped your symptoms? It has taken mine clean away, as it did the first time too, but I'm sure it will come back as soon as I have given birth. Good luck with the methotraxate and let us know how you get on. Carol X
  • EmmaL
    EmmaL Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Carol
    During both pregnancies it went into remission & life was blissfull. I felt better during both than I usually do. First time round it was like hitting a switch. I knew I was pregnant by how good I felt! We always joke I should constantly be pregnant! Reducing/coming off the Methotrexate before getting pregnant was tough and I've been up & down with prednisolone. I have an appt tomorrow as am in a flare but my baby is now 8 months so it's been pretty good!
    I'm really excited for you! I think we are pretty amazing to be able to go through all this & produce such wonderful little babies! How old is your other? Mine is 3 1/2.
    I wish you all the best with the second & it's lovely to chat to you!!!
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Thank you, you too! My first is barely 16 months - I hadn't intended to get pregnant again so quickly but I'm counting my blessings! It's for that reason that really I've been ok for the past 3 years as I have either been pregnant or breastfeeding, so we shall happens this time - I'm certainly not intending to have any more kids though yes, it is tempting just to be Still's free! X
  • EmmaL
    EmmaL Member Posts: 3
    edited 30. Nov -1, 00:00
    Wow, that's close in age. Good luck! We will not have anymore. I do not want to keep taking prednisolone long term as my hip is deteriorating & I think it's part of the reason. Have been told I need it replaced but to hold off as long as I can. Was a bit of a shock I must say. Hope you can get some rest in the final weeks of your pregnancy!

    Emma
  • BeckyH
    BeckyH Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Carol, hi all,

    Hope you're well and that bump is doing fine! I finally got to rheumatology yesterday morning after 4 years of going round all the houses.. Was very fortunate to see the head of the lupus unit at St Thomas' London, who was as fantastic in person as his reputation says he is. I now know that I do not have AOSD. I do have a 'lupus-like' rheumatic disease plus Hughes Syndrome (an autoimmune clotting disorder) and Raynauds and will be starting on a disease-modifying anti-rheumatic drug called Plaquenil (which bizarrely is an anti-malarial) once I've had the ok from my optometrist (it can cause retinal damage so eyes need to be tip-top before taking it and checked regularly). I'm thankful that I'm being treated now, before my body has the chance to decide it wants to completely self-destruct!

    So I just wanted to wish you the very best and thank you for the kind words and first-hand info last month.

    Be well :) Beckyx
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Becky,

    Truly delighted you got some answers and you can move forward now. Best of luck!

    Carol
  • gems907
    gems907 Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi all

    Have been so busy this past few months that i hvent had a chance to post anything on this. Glad to hear that others have found this forum - albeit that we are suffering from this!

    I have now started on methotrexate and am in the second month of being on it. Had a brief 'flare up' but it seems to be working no pains although it hasnt got rid my rash yet and it is driving me crazy!! So itchy! Does anyone know of anything that would ease this itchiness? Have tried numerous creams but to no avail!!

    Hope everyone is keeping well

    Gemma x

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