Hi everyone from sunny but cold England.
Have just come across this fab site and was wondering whether anyone can help. Have just been diagnosed with an aggressive form of RA known as Adult Onset Stills Disease.
Has anyone else been diagnosed with this very rare disease as there seems to be little information on it.
I noticed that many of you have been prescribed MTX which I had a severe reaction to - just been put onto a new wonder drug (self inject daily) called Anakinra, part of the Kineret group but its advantages are that it is biological and not chemical and does not have the same nasty side effects. The drug is expensive - but hey I'm worth it!!!!
Hi, Jo
I also have AOSD -- and have had a severe reaction to MTX (almost killed me outright on inital dose). There's several good websites around that speak of AOSD, and it is almost identical to systemic onset juvenile rheumatoid arthritis. I am just making do with prednisone at the moment.
Feel free to ask any questions you'd like.
Janis
Would either of you care to mention how the Dx of AOSD came about and the symptoms that you had.
I still have niggling doubts regarding my Dx. I keep a rash, not itchy, on the top right side of my left wrist about a 2" oval along with the joint involvement.
Thanks so much.
What is stills disease?Bonny:
I'll relate my experiences as best I can, but not all Adult Onset Still's patients "fit the mold" 100%." As best as I can reconstruct the onset of this disease here goes:
Woke up one Sunday morning feeling okay. By afternoon, I had a huge pain in the middle of my chest that only felt better by bending forward. The pain persisted during the night and the next day I went to my M.D. who diagnosed me with pericarditis (inflammation of the lining of the heart). It took me a long time to kick the pericarditis. Though I had been complaining of joint pain, fatigue, and all the other non-specific things that go along with a rheumatic type illness, it was dismissed as "all in my head" and that devil "depression." Shortly after I was over the pericarditis, I started running the fevers. Very high fevers would onset in the late afternoon (after doctor's office hours, naturally) and would break by morning. The fevers were in the range of 103-106 degrees. Chills, naturally, accompanied these high fevers. The doctor dismissed the fevers as "some kind of bug, take some asprin." My lymph glands would swell like crazy and be very tender in both the throat area and the groin. I didn't get the fevers daily as many of my fellow Still's suffers do -- mine would come every couple of weeks and then gradually more and more time would elapse between them. This phase lasted for years. After the fever, I noticed a very pale pink/coral rash on my chest and abdomen. It was very curious as it didn't itch. I also noticed that my body temperature was reset lower after the fevers. I would get "normal" temperatures in the 95.3 to 96.4 range. My formal "97.3 normal" has gone forever. The bilateral joint pain increased, and then finally one morning I awoke and looked at my hands and saw the synovial lumps above all my knuckles (with the exception of the thumbs). By then I had a new doctor who diagnosed me with RA. That still didn't explain the really high fevers and rash that came and went. It was only when I had been describing the fevers on the board (the old AI) that someone suggested that I look at the symptomology for Adult onset Still's disease. I fit the mold pretty well. I suggested it to my doctor who said "that would explain things a lot better."
I no longer get the high Still's fevers (or haven't had one in several years) and when I saw a rheumy, it was confirmed that I had Still's. She did say that the fevers are self-limiting. The only time the rash appears anymore is after a really good hot shower. Still's rashes, as I understand it, can appear anywhere, but most frequently on the chest or abomen.
You will find that the symptomology for systemic onset juvenile rheumatoid arthritis is almost identical to AOSD.
There are a lot of things in my past medical history that could point to having this disease even longer. I had very frequent stomach complaints when I was a child (and was hospitalized at one point for an undiagnosed illness), I had frequent high fevers, my mother confined me to a darkened room for one day citing that I had "the one day measles" etc. etc. A couple of my doctors now think that I may have had JRA but it didn't become acute until adulthood. Who knows?
Hope this helps.