Hi – I have been going through hell for about a month. Typical inflammatory blood markers, rash and fever daily, exhaustion, swollen joints and stiffness. One day it’s the right hand, two days later it’s the left hand. I have to get s body scan to rule out lymphoma but my rheumatologist is pretty sure it’s Aosd and it certainly matches the symptoms. I have been housebound except to go to dr appointments. I am struggling with fear about what the future will bring as it seems like even with a diagnosis, there’s no one predictable treatment. I have been on prednisone 3 days and am doing so much better except the rash which seems persistent. My rheumatologist wants to put me on daily injections of Akinra which scares me due to side effects. I would like to do the least harm possible when treating the disease, for the shortest time possible. He has not talked about methyltrexate.

I am hoping to be one of those who has one flare and then it goes away as suddenly as it came. For some reason my rheumatologist thinks this will be a lifelong disease for me.

Did you ever use any of the biological drugs? Or just methyltrexate? Prednisone?

I live in Seattle and have a great rheumatologist but we were in the middle of moving to Scottsdale when this happened. We will have to make the move once things settle down for me but I’ve been dreading finding new drs in Scottsdale.

Was the rheumatologist you saw for duet modification able to treat all aspects of the disease and medications (vs just diet modification?). I’ve googled Scottsdale and Phoenix rheumatologists and am seeing terrible reviews. Even the Mayo Clinic doesn’t get great reviews. Do you have a good pcp in the Scottsdale area?

I saw that you had a big flare this year. I hope you are much better now. I’m sure having a flare is very frightening because it makes you realize how unpredictable this disease can be. Best wishes and prayers from a fellow traveler.