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 Still Disease, pay close attention you may never see this diagnosis again” . The residents peer at me. He asks to show them my rash. I pull off my shirt, undress to show my thighs, and they investigate my skin, feel my lymph nodes, ask about the disease and my inital onset which landed me in the hospital for 10 days last year. I am glad that I am providing information to these new doctors. My hope that they may recognize disease immediately and help some other poor soul before they suffer for months and months like I did.
I had terrible nights these past 4 nights, sweats, chills, fevers to 102, coughing spells, the rash. The rash is horrendous. I had my husband take photos last evening. I took copies to the doctor for his residents to see the full 7pm flare. My glands hurt so badly last night I could barely swallow saliva. No appetite for 4 days. He prescribed the full steroid course, no fast regimen this time like a few months ago in August. nope. We are doing the full course. Big time. And this time when I taper down, I will request, demand that I stay on methotrexate for 1 year.
So here I go again back on high steroids. Took them with guava juice and immediately I feel awesome!! I feel so energetic and all my worries are gone. Kind of like how a person might crave a martini and the feeling of that first sip. Of course, I would not know this, since I am not allowed any alcohol with methotrexate, would affect my liver, I don’t need cirrhosis of the liver. And I have been on Methotrexate for over 1 year.
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.