Feb 27 2004
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!
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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.
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
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
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.
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.
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
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
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