Things have been going well. I have not had any full relapses. But In the last 7 months I have had a few episodes of rash coming on directly after feeling very cold and chilled. Today i experienced a rash episode. I had quite a few errands to accomplish which is not unusual on my days off from work. But something seemed different about the way I felt this morning. I had a slight stomach ache, which I rarely get. I carried out my tasks as normal, grocery shopping, hair cut, post office, etc, then I went to the gym. After I worked out I felt very cold, chilled. I looked at my neck and chest and abdomen area in the mirror and noticed a faint rash. Somehow I knew it before I even checked. I always feel different when the rash begins. So I went into the steam room to get warm. When I get this cold it so difficult to warm up.
Here’s the weird thing. I had my 1/2 yearly check up with my rheumatologist. He reviews my liver panel and labs due to the MTX. As usual, He asks about rashes, flares, chills fevers, etc. I told him I get them when I’m over tired or get a cold or the flu or if I have a tremendous lack of sleep.
Then he says, ” I think we should try to wean you off the methotrexate” I said, “WHAT!!! why would even consider this when I still get rashes???!!! If I still get rashes then I will ABSOLUTELY relapse into a FULL FLARE!! Just like I have done the last 4 times!!”
But he was persistent. His reasoning was my labs are good. I kept telling him I get rashes and chills about every 12 weeks. Not daily and not even weekly, but they still appear. Eventually I said ” yeah, yeah, whatever”. I paid my bill and left and now I’m ready to find a new doctor.
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.