Dare devil this time.
I don’t tolerate the methotrexate pills well at all. They make me nauseous. So I was given the shots to draw up on my own once a week.
My last visit revealed my labs were almost normal!! Yippee!! So I began my own taper with the methotrexate injections. Yup. It’s true. I am a dare devil. I feel great and I have more energy. I’m not requiring 12 or 14 hours of sleep anymore. I’m actually doing well with 9.
I do not recommend this to anybody in a flare. I’m just reporting that after many months this feels right.
It’s been quite a few years since my last flare. I am estimating 7 or 8 years. What a sad day it was when I flared after so many years.
But upward and onward !!
Stay healthy my friends,
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
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.
Hello Vicki, I am so sorry you are suffering. I have had great success, when I flare, with Medrol and Methotrexate. I am allergic to Prednisone and gives me hallucination and illusions that I can fly (not a good thing when I live in a high rise building)
Stills is a bizarre disease. I know that there are roughly 3 different types of the disease: 1) a one time occurrence amend then, bingo its gone. 2) Remitting/relapsing where it comes and goes on its own (damn) desire. And 3) chronic
I have found that I have had very long healthy periods of time (up to 7 years) until I encounter an extremely stressful situation that my disease finds attractive, or a breakdown of the immune system, or a catastrophic situation to the body, as in my last flare with my broken leg. UGH😢 4 broken bones + Stills flare = complete misery.
I do have a very good Rheumatologist that I use in Scottsdale. His name is Dr Paul Howard. A very caring and gentle man who sits down for as long as the patient needs. I highly recommend him. He does not accept insurance. But after going to other ‘sub-par’ doctors, my husband and i found there is nobody better.
Please keep me posted. I am sending you my wishes for a quick and onetime only flare🙏🏻💟
Please rest and get healthy.