So what is Adult Onset Stills Disease?

The link takes you to the AOSD web site.  Its a rare disease thats a bit like Arthritis, I started with it about 4 years ago and its been getting worse since then.  Here’s a little bit of background:

AOSD is an inflammatory condition that attacks internal organs, joints and other parts of the body. It can appear and disappear suddenly. In very severe cases, AOSD becomes chronic and extremely debilitating, causing terrible pain and stiffness. After many years, the disease cripples vital organs such as the heart and lungs.

Thats the bad news, I will tell you a bit about my experiences with AOSD soon, and then things will get a lot more positive!

Steve Richards

I'm retired from work as a business and IT strategist. now I'm travelling, hiking, cycling, swimming, reading, gardening, learning, writing this blog and generally enjoying good times with friends and family

15 Responses

  1. Bryan says:

    Hi Steve.
    I’ve arrived at your site as I too have good old AOSD and apart from approx 8 other stillers that I’ve met at Arthritis Care and NRAS website, thats it.
    It would be interesting to share experiences on our condition. By the way, wherabouts are you on the northwest coast? I spent 5 years at Lancaster and spent many hours bimbling around the area. I was very fond of Glasson Dock – a good place to chill out with a book..
    regards,
    Bryan.

  2. Steve Richards says:

    Hi Bryan,

    I live in St Annes on Sea, Glasson Dock sounds nice I will have to take a look. I’ll post a proper update on my progress with Still’s some time. Right now I would say that as a result of Methotrexate the stills is pretty much damped down. I still get a mild flare every time I get an infection, seem to get a lot of infections and day to day just suffer with aches, a few pains and migraines. So symptom wise it now feels more like Firbromyalgia than Stills.

    Steve

  3. Janis says:

    Hi, Stephen:

    I’m also diagnosed with Adult Onset Still’s disease and would like to add that it’s not “a bit like arthritis” it IS arthritis — it is virtually the same thing as systemic onset Juvenile Rheumatoid Arthritis.

    It took a good while to come up with the diagnosis for my fevers in the initial stages would come after the doctor’s office had closed and would be gone in the morning when they opened.

    If you’d like to share info, I will be happy to discuss this more.

    Iguana_Lil
    Kansas USA

  4. susan sansby says:

    Hello Steve,
    I have never met any other adults with stills and have just discovered your site!

    I was diagnosed in 1985 after three years of doing the rounds of local hospitals and various consultants. Have been quite settled over the last six years but a bit of a flare up again at the moment.

    My experience is that stills does it’s worst in the first eight to ten years then it settles down and you manage the damage. In my case I made big lifestyle changes which have helped to keep it at bay over the last fifteen ears. Colds and infections always seem to make some of the symptoms return. Mine is usually controlled by hydroxychloriquine and antibiotics. Am happy to share experiences and info.
    Susan.

  5. Hi Steve,

    Just wondering if you are the guy I have chatted to a few times on the Stills forum. I was diagnosed 7 years ago and too work from home with my own website for scrapbooking. I am currently receiving Tocilizumab (IL- 6 inhibitor) every 3 weeks by infusion (its still on trial, but got it on compassion grounds) together with 10ml Methotrexate weekly and 10g Pred daily – seems to be really helping with the joints but its a daily battle of exhaustion and generally feeling not well one minute and having a good day the next – as we all well know.

    Take care and keep in touch.

    Ruth.

  6. Jackie says:

    Steve,

    Hi, I was diagnosed with Still’s disease in March 2008, after almost a year of tests and procedures. I have been on a multiple of combinations of drugs. Currently my Drs. want to try IV Cytoxan as a last resort. If this does not work they want me to go to the Mayo clinic. If you or anyone have any suggestions, it would be appreciated. I know this is a rare disease and not many treatments available.

    Jackie

  7. Josh says:

    Hi,
    I have just been diagnosed with AOSD aged 24. Has anyone been to the Mayo Clinic? Is it worth it? Have you been able to manage jobs/careers with Stills? I have just had a few flare ups and am still trying to work out the best meds for me.

    Josh

  8. Steve Richards says:

    Hi Josh

    I’ve not been to the Mayo clinic being in the UK. But I have managed to keep working and I’m working full time now. I did need to find a job that allowed me some flexibility and an understanding employer, but its worked out well

    Steve

  9. Gary says:

    I was diagnosed with Stills in 1994 and have been dealing with it since. I’ve also developed Fibromyalgia with Stills….so the muscle aches along with the joint stiffness can be incredible at times. I have used so many different types of medications to try and deal with the pain but it is going to be a life long battle it seems. For those who suffer with this illness my heart goes out to you as this is something that wears you down mentally as well as physically.

  10. Steve Richards says:

    By far the best place to start is the Stills org http://www.stillsdisease.org

  11. Rob Burgman says:

    Dear All,
    I was recently diagnosed with AOSD at age 55. I am a former college football player, been active all my life, and a life long coach and educator. Late last January I was hit with all the symptons associated with AOSD. After multiple tests and hospital stays, a wonderful rhuematologist diagnosed and has been treating me. First the awful corticosteroids and now a bi-weekly infusion of a drug called Actemra. I work out daily both with weights and cardio to try and keep my heart and joints/muscles strong. The infusion drug has been tremendous. I do have some aches and pains but I am back to work and feeling pretty good. I am concerned about the long term but I have taken a personal vow to live each day as it comes.
    Rob

  12. Valerie Hill says:

    Yes i currently have AOSD i was diagnosed with.this disease.in Feb of 2012 and.i was admitted in Emory Midtown hospital for one full week because at firstthe doctors didnt know what was wrong with me.because my.fever was greater than 102 and they ran so many tests on me checking fot disease that was out and that people have today and THANK GOD all my tests came back negative so doing my.week in the hospital they finally came up with soñething and.it was AOSD and my husband and i was what is that.and where.did it come from. Last year when i was diagnosed.with the disease.i was very, very.helpless to the point i couldnt clean uo my apt, cook, get in and out of the tub without help, comb my own hair, walk up and down stairs, bend, stoop, hold stuff.in my hands.without dropping it, i was on a cane.and.in a wheelchair for 8 months.last.2012 so after.i was released from the.hospital i applied.for SSI and i was denied twice and so i had.to get me an attorney.call the Cochran Firm so now we are awaiting for social security to sign me to a judge to be able.to get SSI and now its 2013 and i still currently have.the fevers, joint pain and the.swelling the red rashes and.that flat bumps that is very vwry.itchy and.im still on medication call prednisone, tramadol that.was switched.from percocet. And also my family and i have been homeless.since.i was diagnosed with the disease.in feb and.we became.homeless.in july.of 2012 due loss.of my job that caused us to loss our and as of this.day july 2013 we are curretly homeless staying from.shelter to shelter, hotel to hotel to staying with people that dont want us their

  13. 1radmama says:

    I am a 38 yr old single mom. I was diagnosed with AOSD when I was 25. After a year of doctors trying to figure out what was wrong with me I was put on high dose prednisone and methotrexate. I was weaned off the prednisone after about 3 months and stayed on methotrexate for about a year. My disease went into total remission for 14 years. Life was great for me during that time. Now I am experiencing low grade fevers, night sweats, sore throat, extreme joint pain especially in my wrists. Like so bad I can barely drive my kids to school or the sitter. This started a couple months ago but it was just one wrist that was hurting. Now I am experiencing body wide symptoms again. And from experience I know what is going on. I have a new primary care doctor and he doesnt have a clue!!!! I have tried to explain to him that I know what is going on and I cannot go through another year of tests and doctors trying to figure this crap out again. I’m at my wits end. I am currently waiting for a referral to a new rheumatologist because my old one from 14 yrs ago has retired. The pain in my wrists is so bad I would kill for some painkillers. Other than ibuprofen!!!! Anyways I’m glad to see that I am not the only one going through this…

  14. Erin says:

    I was diagnosed with AOSD two years ago. After some trial and error, I’ve been managing through weekly doses of methotrexate and daily Kineret (Anakinra) injections. While I still struggle, I was able to go back to work full-time as an attorney, and I’m still going strong.

    Good to know that there are others out there… Keep your heads up and I promise to do the same!

  1. May 21, 2015

    […] second post was also incredibly short, quoting the Adult Onset Still’s Disease website’s description of […]

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