No News Is Good News
It has been a while my last post. Once in a while I would think about posting but felt like it could be an omen that I better let sleeping dogs lie. It is strange how the fear of a relapse can trigger a paranoid feeling. I am still on 2.5 mg of Methotrexate a week (1 small, teeny, tiny yellow pill). It has been over a year now, just 1 pill. What a thought that perhaps I do not even need this 1 tiny pill. Every Monday, I open the bottle, I hesitate a few seconds, and my thought is as I think to myself, this will be the last pill I take, next week, Im done! But every week, I can not bring myself to stop. However, brave and courageous, I almost stppped! I did, wait until Tuesday, and even until Wednesday several weeks ago. I just didn’t want to take it. But, I couldn’t sleep, I couldn’t face the thoughts of fear. I got up out of bed at 2am to take the methotrexate. I just cant take the chance. I CAN NOT TAKE THE CHANCE. I can not face the possibility of flaring again. The fear is profound. I become anxious.
Every little out of sync signal is taken as a “what if”. I know this type of thinking is not healthy. But thankfully, I do not get many signals at all. Maybe about once a month I will get a loud, body encompassing message that I have over done it, and the last one was this past saturday. I worked a long day at the hospital, longer than usual. Since the caseload was high, I tried to see as many patients as possible. I came home exhausted, ate dinner, and went to bed with chills, so cold I could not warm up ( I live in Arizona where today it is 108 degrees), to not be able to get warm in this weather is a signal to me that things are a little off kilter in my body. Then, 4 hours later drenching sweat. But…..thats all. It does not reappear, no real rash shows up, no ongoing symptoms, no joint pain (this time), no residual fatigue the next day.
So, I don’t know if this is common for AOSD people, is this ” immune system? malfunction” a long ago vestige of beast that lived, kind of like an appendix? No longer useful (they say) but stays around until it flares once in a while? Either way, I feel fine. In fact, I feel great. If the one measly pill keeps the dragon away, don’t mess with success. I mean seriously, taking 1 pill a week takes about 10 seconds to; open the bottle, swallow it and rink some water. It sure beats months of devastating joint pain, sweats, swollen lymph nodes, liver changes, high levels of steroids, high amounts of methotrexate that make me vomit and tremendous suffering. No, I think I will take the beautiful little sunshine yellow pill.
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.
I’ve found since my Still’s went into remission TGod. I now sweat very easily. Never did before. Strange.
I am so happy that you are in remission. Stills is such a strange disease, some people flare once and never again, some flare chronically and some flare then go in remission and then flare again. And some flare chronically for a few years and then never flare again.
Regarding the sweating, I too, seem to sweat a lot more easily. It seems my heat tolerance is wacky, and of course, I live in Arizona. But at the same time, my tolerance to cold appears to be off too. It’s like my internal thermostat is a bit off. But an internal thermostat that is off is much better than a flare!
Curious, how long did you flare?
Thank you so much for posting this journal. I was diagnosed with AOSD in December 2005. I was wondering if you experienced your skin peeling once your rashes subsided? My skin peeled off in long strips. I also had areas where the skin would split open leaving a painful raw sore. In addition to that I developed multiple canker sores in my mouth that left me barely able to eat and sores in my nose as well. I took Relafen and then Celebrex and wound up with acute gastritis and an ulcer plus I kept relapsing so I was put on Plaquenil. It took awhile to work and my rheumy was talking methotrexate next but eventually the Plaquenil kicked in and worked very well for me. I’ve been off all meds for nearly 18 mos. and am feeling pretty good but every time I feel a pain in any of my joints or unusual tiredness that anxiety comes flooding back so I sympathize with your anxiety issues. Wishing you all the best –
Hello Michelle, thank for finding my blog. I was thinking about your experience with skin peeling and I must admit I have never had this side effect from AOSD. It sounds very painful and irritating. I have also never experienced the canker sores in my mouth or nose. I am so glad you finally found medication that worked for you. Like yourself, anxiety comes quickly when I feel a sore joint or extreme fatigue. From the experiences I have encountered from readers and families who share information, it seems that AOSD affects each us a bit different. I am on 1 single pill each week, I call it my superstition dose. My Rheumy feels that if 1 pill is all it takes to keep me from relapse then keep on. Even if the the 1 pill is practically a placebo, being such low dose, it eases my mind. Thank you again for sharing your experience with me. Stay healthy my friend. Claudine