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.
2010 4th of July was a super happy day, finally after 10 months of methotrexate, I weaned down so slowly, so that my body would never notice that I went off of it. 8 weeks later, I have an enlarged lymph node again, I have had 2 bouts of fevers. I saw a faint rash…
Read more Weaned off all Medication July 4th 2010, 8 weeks later,lymph node
Here I am again : ( I thought I was doing pretty well a few months ago. My M.D. took me off MTX and I was fine for 8 weeks then rash came back, then fevers started few days later. He put me back on a quick streoid dose with MTX and I was o.k.…
I guess what is so disappointing is I miss my old self. I miss my energetic body. I miss my endless energy. I miss knowing that my body could handle wonderful hours of exrecise at the gym. I miss being a workaholic. I miss working 6 days, sometimes seven days a week. I miss taking…
I went to the doctor yesterday, because the disease is rearing its ugly head. I waited in his waiting room. I saw him, along with 3 new residents he usually brings into the room. I always feel like a specimen on display when he says something like ” Here we have a classic presentation of…
I don’t know why this disease acts so radical. For 2 days I had almost zero rash, I felt fine, energy to spare. Then WHAM! I get a fever driving home last yesterday so bad that I had the heater turned up to 80 degrees, the windows down (the temperature outside was 100 degrees, because…
if it’s not one thing it’s another. I stopped taking vitamins. the iron was making me have terrible rash. but today, 2nd day NO RASH! I guess my ferritin still attracts iron?? i’ve been freezing all day. It sucks feeling like a popsicle all day. I hope it was just the aircond was too high…
I started back on MTX. It’s been several weeks now. I have also been SO diligent to take in as much folic acid as possible daily. I hav not even had one episode of burning feet, or feet that feel like walking on broken glass. It is true, you MUST ingest about 3000 mcg of…
I guess, I have to admit, that there are some positive things about having this weird disease. I have slowed down my lifestyle a little. I am very conscious about my energy expenditure and I think about how long each task might take. I do sometimes need reminding that I am about to overwhelm my…
The Day I say saw red spots on my abdomen, I thought for sure I was having an allergic reaction to the chlorine at the new gym. BUT NO. Still’s came back. So, I went to go see My doctor Friday, July 24th. I was paniced. The last thing I need is a flare. I…
I’m heading towards a flare. I know I am. The rash is extreme, all over my abdomen, back, and towards my chest and neck. It has not spread to my legs or arms yet. I ‘m trying hard to stop it with steroids. But so far, the rash appears to be ignoring the stop signs…
Adult Onset Stills Disease 