Anyone out there with Adult Onset Still's Disease?

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Comments

  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    Hi su I'm also going through the change and have a problem with sweating, I was told it was to do with the meds concoction I'm taking.i walk round with a permanent rosy face, live in vest tops even in winter and constantly feel like I need a cool bath to stop the sweating but nothing really is working. Your not alone with this but I'm sorry to say I too don't know what I can do about it xxx

    Loulou11
  • borgania
    borgania Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi em78,

    thanks for the reply! I feel hot while having the sweats but my skin feels cold and my temperature is usually below normal. The Still's rash also becomes more noticeable while having one of these episodes. It just makes me feel manky and its so debilitating! It has taken several months for it to be taken seriously by anyone and it was really only while I was in hospital a month ago that someone could finally see that what I was describing wasn't normal!

    Su
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    I know how you feel! I started to doubt my own sanity before i was taken seriously. I still get hospital fatigue now and all my diagnosis and investigations. My Still's and rash is always worse in the summer months and when it's hot. It also gets set off by my own hair touching my eyes and face so I have to super condition it! It's such a pain.

    I am completely with you on the manky feeling. Waking up in damp sheets is especially horrible.

    I really hope you get some answers soon xxxx
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Su and everybody,

    Glad you are getting some replies Su, hope it is helping. I thought LouLou's comment above was really interesting, fingers crossed the sweats is menopausal related and will pass soon.

    All the best to everyone,

    Carol X
  • Strawberry
    Strawberry Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi Carol I read your post and was hoping you can help? I had a flu virus about 3 months ago and it has left me with high fever spikes, aching shoulder and hip joints and a rash on my arms and legs that appears and disappears several times a day. I googled my symptoms and it came back with Stills disease. Did you go to your own doctor and was it hard to get a diagnosis? Thanks in advance. Linda
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi Strawberry and welcome from me too. I'm so sorry you've had such nasty symptoms but, as Sharon has explained, we can't diagnose and, even if we could and it was AOSD, you would be unable to get the appropriate treatment without seeing a doc.

    It certainly could be AOSD but it could also be lots of other things. Please get it checked out and do let's know how you get on.
  • Rossc
    Rossc Member Posts: 2
    edited 30. Nov -1, 00:00
    hello all.

    I was diagnosed with juvenile onset stills disease in the year 2000 following a bad reaction and total paralysis from a meningitis vaccination i had in primary school, i was 10 years of age.

    The doctors were absolutely clueless as to what was wrong with me and over a period of several months i saw over 10 consultants and was in 3 different hospitals one was a cancer hospital as they thought i had leukemia and tested my bone marrow. I was a very, very active child and one of the most athletic in my whole school year until this happened and became totally bedridden overnight. my mother found my diagnosis in the library my specialists were absolutely clueless!

    The symptoms were initial paralysis, swollen joints (mainly hips, knees, wrists, elbows and ankles), salmon colour rash, high spiking fever, low iron count and increases white blood cell count. I missed a whole school year and i finally went into remission from the major symptoms by using high doses of ibuprofen and other drugs im unaware of. The arthritis has always stayed, even though it wasn't anywhere near as bad as in the flare up.

    I lived life normally afterwards acting as if i was cured but as i grew older i realised the severity of my illness from reading online and decided to go for a check up at the age of 16. my consultant DR. xxxxx at the university hospital said i was ok but the symtoms or flare up could come back at age 25 and i could be in a wheelchair by the time im 40.

    i continued to live life as any normal adolescent does and basically ignored this chronic illness as it was sort of invisible apart from the aching joints and tiredness. Now i am 27 years of age and the rash has started to come back and i feel extremely fatigued on a regular basis and have had problems with my hips even though i am still an active person (mountain biker/manual labour) i have also lost around a stone in weight since i was 16.

    recently i sent my consultant a letter and i was told that i am out of the catchment area to see him on the NHS and even if i see him private i cannot be transferred to the NHS, which i found appalling!

    i will report back on the results i have from whatever they decide to do with me but as i am older now i would like to see the progression of my illness and hopefully help others by recording this information.

    hope all is well, Ross :)

    Hi Ross, apologies I have removed the name of your consultant and the place. This is part of our terms and conditions "Don’t identify healthcare professionals by name: Please feel free to share your experiences of receiving healthcare services but be careful to not identify any health professionals by name as this could be unfair to them and potentially libelous".
    Please don't let this put you off posting, we love to hear your stories and experiences
    Sharon
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi and welcome from me, too.

    As you'll have read the above thread, you'll know I officially have Stills though not AOSD as, like you, I started as a child. I just say RA these days as I no longer get the rash or fever and the rheumatologists agree.

    Yes, diagnosis can be a very tricky area in the realm of autoimmune arthritis and I'd guess the overriding concern of your docs would be the paralysis which is not something one gets with arthritis so that would throw an enormous spanner in the works.

    It's great that you've had such a long remission and been able to do so much but I think you're absolutely right to get back to rheumatology now and get on some proper DMARDS. I hope all goes well. Please keep us informed.
  • Rossc
    Rossc Member Posts: 2
    edited 30. Nov -1, 00:00
    thank you for the quick replies it is nice to hear off other people with stills as i have never spoken to anyone with the same auto-immune problem. Reading through this thread has been interesting to say the least!

    The major thing with me was it was a direct effect from the vaccination i received, no way to pinpoint it exactly because it is impossible but i was paralysed days after the vaccine. They initially treated me as being poisoned or toxicity related, even my consultant admitted that it was probably the vaccination that initiated it.

    I still have the rash and anemia but the fever has never come back so i am lucky really.

    I shall post the results after my consultation but due to NHS funding i cannot see my specialist anymore unless i pay private.

    hope all is well (y)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Ross, I have psoriatic and osteo arthritis and have been on the meds for years, you name it I've probably tried it :wink:

    It's such a shame the good times are ending for you and I hope you can soon get back into the system. Any form of auto-immune arthritis needs to be brought under control to slow its progress and I hope you will soon have an appointment.

    Hello Strawberry, I don't have what you have but I hope you find the forum to be of interest. We haven't heard from the original poster for some time but maybe others will be able to help. GPs cannot diagnose an auto-immune arthritis, that can only be done by a rheumatologist; the starting point is the GP ordering certain blood tests and then maybe referring the patient to rheumatology. Have you seen your GP about what's been going on? DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I wouldn't worry about not being able to see your former consultant though I can see how you might, given the difficulties of your initial diagnosis.. Any rheumatologist should be able to treat Stills now that it's diagnosed.

    Is your anaemia being dealt with? It is an unfortunate side effect of both the disease and the meds we take. I struggle to keep my haemoglobin levels up but have fewer problems now that I eat some meat.
  • Blueberry
    Blueberry Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi everybody,

    is this forum still alive? I hope so, as I am another lucky one with AOSD, looking for additional practical information from you guys. :)

    I was diagnosed with Still's at the beginning of 2019. There was pretty much going on with my body at that time - great joint and muscle pain everywhere, in addition there was a rash and sore throat. I was given steroids, because my condition was really poor. I should maybe add, that AOSD is already my second autoimmune disease, as I also suffer from Hashimoto.

    Luckily, after only 5 months from the relapse, I was able to stop taking steroids. I changed my diet (above all by limiting dairy and gluten), started taking supplements (such as vitamin D, omega 3, organic sulfur etc.) There was a suggestion from my doctor, that I should maybe consider taking Methotrexate to avoid another relapse, but I strongly refused, because I really wish to have another baby soon.

    My condition today don't look like AOSD at all, because from all the previous symptoms I have only the rash. But the rash is a quite irritating thing, as it itches and the lotions (calamine etc.) do not help.

    My question is: is there someone with AOSD, who - after some episodes with the relapse - has now only the itchy rash?

    Do you also consider your diet (without gluten, dairy, sugar etc.) as something which has a big impact on your feeling?

    For all your support - many thanks in advance!!!

    Best
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello and welcome Blueberry to Versus Arthritis Community Forum

    Yes, we are still here, now under a different name, Arthritis Care and Arthritis Research merged into one charity still supporting people with arthritis, good to have you on board. Sorry to read of your current difficulties, I've been trying to search for a link to help you, unfortunately, I'm struggling. We have some really good forum users who may be able to help you with some of your questions. Can I suggest you give our Versus Arthritis Helplines a call 0800 520 0520, I'm sure they are in a better position than me to help you.

    Enjoy the forum.

    John
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I was diagnosed with Stills at 15 - not Adult Onset, just Stills. It kind of morphed over the years into RA. In the early years it would come and go a bit but, after the birth of my first son it just came and stayed :lol:

    I'd be guided by the rheumatologist re treatment. I certainly wish DMARDS had been on offer back in 1961, I would look very different :wink:

    If you read all the posts on this thread and still have questions I'll try to answer. I don't think we have any 'regulars' with AOSD.
  • Ben91
    Ben91 Member Posts: 12

    Hi everyone,

    I have come across this discussion (from about 7 years ago!) but I am in completely the same boat as a lot of you in here.

    I am 29 and I was diagnosed with AOSD about 5 months ago after spending 2 weeks in hospital. I had every test under the sun including a bone marrow biopsy (ouch!) until they finally diagnosed me.

    being honest, it’s a very isolating disease - my Rheumatologist is very unsure about the disease himself which doesn’t help with the treatment. At the moment I am on prednisolone - the highest dose I had was 40mg per day and that really seemed to keep the symptoms at bay, now I am down to 15mg per day and boy am I feeling it. The main symptoms seem to be sore throat, joint pain in my knees/hips/hands, and muscle pain in shoulders/neck/arms. I have a rash on and off under my arms, on my feet and on my wrists. I also seem to get very clammy and sweaty.

    As I am so new to the disease, and alot of focus going onto COVID by the medical professionals, I was rather hoping to gain advice from all of you that have been suffering. I have a lot of questions that my Dr can’t seem to answer for me;

    • what’s the best sort of treatment; long term pred use isn’t the answer, and I hear bad things about methotrexate. I also want to start a family soon
    • are there any routines that people have gotten into that help manage the stiffness and sore joints.
    • Are there any good private doctors that special in this disease?

    I hope you are all doing well and managing this disease as best you can!

    Ben

  • Tom
    Tom Moderator Posts: 450

    Welcome to the Forum @BenSymonds. You have come across one of the longest running threads on the site.

    You write 5 months after a diagnosis for APSD, concerned at medication and the difficulty of getting information. Here is a link to a page on the site:

    I am afraid that the terms of use for the site preclude the recommendation of any medical professional, nut I am sure that you will find help on the Forum,

    Good luck and let us know how you get on.

    Tom

  • frogmorton
    frogmorton Member Posts: 28,050

    This thread is a bit more recent @BenSymonds

    and this is a good 'story' written by someone with Stills:

    Me? I know very very little sorry, but please do hang around there may still be people lurking and a lot of your treatment may be similar to those of us with other inflammatory arthritides.

    take care

  • Ben91
    Ben91 Member Posts: 12

    Hi Tom/Toni,

    Thank you for the quick replies!

    My partner stumbled across this thread as recently I have been feeling a little bit down with it all; I think the lack of support I have had due to current situations has made me feel a bit worse. Also because my Dr I feel doesn't fully understand what is involved with AOSD, he is struggling to manage and treat me in the correct manner (Through no fault of his own, it is just a very rare disease).

    Thanks for the introduction to newer threats @frogmorton, I will have a look through this evening :)

    It just worries me reading through the side effects of different drugs, and whilst my inflammatory markers are slowly creeping up again I think I need to experiment with an alternative treatment course other than the pred.

    Thanks again!

    Ben

  • Brynmor
    Brynmor Member Posts: 1,795
    edited 19. Nov 2020, 18:54

    Hi @BenSymonds

    Just to cross-link back to the thread posted earlier today: https://community.versusarthritis.org/discussion/53160/adult-onset-stills-disease

    Brynmor

  • frogmorton
    frogmorton Member Posts: 28,050

    Hi@BenSymonds

    Loads of us are taking the medications you fear (and quite understand that fear we all had it too) so there is plenty of support and tips when you are ready to start taking them. Such as what to eat and when to eat to minimise any side effects.

    Steroids are not a good move in the long term for any of us - they seem to be a miracle drug, but really they are a double edged sword.

    Hang around honestly it is worth being here so many symptoms are similar as well as treatments for these inflammatory arthritides.

    Take care

  • Ben91
    Ben91 Member Posts: 12

    Hello,

    Just thought I would update you;

    I have finally been given my proper treatment for my AOSD - Azathioprine, which I will take for the next 1-2 years, initially alongside prednisolone. They will start taking me off the steroids after a couple of months, when the azathioprine should have started working (Apparently can take up to 6 weeks).

    I really wish I had chased this up sooner, as apparently I should have started 2 months ago! But atleast I am on the correct course now (Albeit after another flare up this week!)

    Ben

  • frogmorton
    frogmorton Member Posts: 28,050

    Well done @Ben91

    You are finally starting the right treatment. The steroids will really make a difference sadly it's not a medication we can take long-term, but it's just not a good one to take indefinitely.

    Shame you didn't start it sooner, but better late than never. Best of luck and do let us know how you get on. There aren't many AOSD people using the forum and newer people will benefit from your experience now won't they?

    Take care and 🤞

  • Ben91
    Ben91 Member Posts: 12

    Not long term, but hopefully I will be off them by January/February time when the Azathioprine kicks in! Also found out that I should have been taking calcium tablets due to long term steroid use, as it can affect bones, so if anyone stumbling across this isn't taking the calcium tablets then a little heads up for you :)

    Having a pre-paid prescription card is also a must whilst on this medication. Paying £10.00 per month for all the prescriptions I need is a god-send. I am very well known at my local pharmacy now though!

    I will of course let you know how I get on over the coming weeks/months; hopefully the blood tests should an improvement to the inflammatory markers - having to have tests every two weeks at the moment to see if the current flare up is under control.

  • frogmorton
    frogmorton Member Posts: 28,050

    Definitely steroids can damage your bones my own daughter has had to have hip surgery (18) and a new shoulder joint (19) entirely due to steroids for leukaemia. This is why I always carefully check how long people are going to be on them for. I don't like to worry people, but they are a double edged sword.

    To be fair though she was on dexamethasone which is 7 times stronger than pred and was also 16 (still growing)when she was taking them and female which is an extra risk and took them for 2 almost solid years.

    I am so pleased you are on the right medication now and hope it isn't too long before the Azathioprine kicks in 🙂

    Best of luck now.

  • Ben91
    Ben91 Member Posts: 12

    @frogmorton I’m sorry to hear of your daughters struggles, it sounds like she has had a rough time, but I hope that she is doing better now? She sounds like a trooper!

    Hoping the Azathioprine kicks in properly soon; have had two blood tests this past week, the first had my CRP levels at 194 and the second had them at 86, so there is some definite improvement!

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