Everythings fine…..until it’s not
Pompous. Yup, that’s a good word for the day. Well, actually that was the word of the day last Wednesday (july 22nd) when I decided, “Everything is going so well, I don’t need these STINKIN’ methotrexate pills any longer!!!” I’m done!!!!!!” I have felt fine for so long that I truly felt that I could stop taking the medication. And I felt great, for several days. I mean seriously, since I had tapered down to only measily, miniscule, tiny pill, how much was it doing anyways? It was a superstitious dose anyways right? I’m not sure that it was doing anything anyways. But…. maybe that is why I was feelling so well the tiny dose was all I needed.
Justifying small signs as, “fatigue”, “out with friends late”, “maybe dehydrated?”, “mild sore throat for 2 days, probably just a little virus”, ” low appetite…”, “sleeping more, maybe I need rest”. Until last night…………drenching sweat and cold and freezing goose bumps, teeth chattering. “NOOOOOOO!!!!!!!”.
I changed my night t-shirt and then flipped my damp, cold pillow to the dry side, since I was too tired and cold to change the pillow case last night at 2am. When my husband asked me how I slept, I told him about the drenching sweat and feeling cold. He gave me that look of , “I didnt think it was a good idea for you to just stop your pills”. Every spouse knows that “I TOLD YOU SO” look from the other spouse.
I started the methotrexate again this moring. I am hoping that this is not a slippery slope and will not be able to catch the methotrexate train. To start getting the signature rash, intense joint pain, voimiting, etc, etc is too much to ever go through again.
I understand there are several types of AOSD. The ‘one time flare’ that never returns, The ‘chronic flare’ that never stops. And the flare that goes away with medication but keeps returning when even the smallest dose of medication is stopped. This, I understand, is the edition I own. It’s like a book. Yes, it’s been read several times. It’s a stupid book. I can’t stand it. It’s on the shelf, but it can fall of the bookcase and hit me really hard if I ignore it.
Stay healthy my friends,
Claudine
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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.
Adult Onset Stills Disease 
Dear Claudine,
I hope this finds you feeling better and that the restart of the methotrexate has stabilized your status and things are getting back to your normal. How frightening for you!
Your message came at a good time as a reminder for us all that this disease is so unpredictable. I just wish you did not have to post. I think many of us just want to forget we even have this disease and live life like “normal” people. Not have to think–did I get to tired; is that “the rash” or am I imaging it; maybe if I fall off the wagon a little, it won’t matter–especially if we get away with it once or so….
Yes, no matter what we do, the book we never want to re-read may fall off the shelf and a page open up. Stay well and vigilant.
Prayers that you are well,
Patty