I told 3 doctors and a nurse that I was ‘at breaking point’. No one took me seriously, because everyone forgot that fast prednisone dose changes can cause psychosis.  My immunologist is the person who ordered the taper, because she is concerned that I have a rare form of leukemia, and I have to be off prednisone completely before she can do the bone marrow biopsy to find out.  The risk of cancer trumps adrenal insufficiency every single time. So no, I’m not stupid, to the person who told me I was. Just very physically ill and under immense pressure, with and endless supply of impossible decisions.  A fast prednisone taper tipped the balance.  But a few people have asked, genuinely kindly, why I am tapering so fast, and why don’t I just stay on a safe doses of prednisone.  That’s why.  Potentially very serious diagnosis, that no matter how rare, has to be ruled out.  Seems I’m an object lesson in rare side effects sometimes, but I did ask for help. I told 3 doctors I was not coping.  True, I made a rash of poor decisions that ended in a psychotic episode. But so did my doctors.  Recovery isn’t linear.  It’s a 3 steps forward, 2 back kinda thing.  All the reasons I broke down are still in play. I’m at 2mg of prednisone and I still need to keep tapering. And my next blood test, in 10 days will be all important.  If my eosinophil count is higher again, that won’t be good.  But the answer to the other burning question? Yeah, my hair is cute. Change is good.  And even if it’s horrible, it grows back. Its just hair.  Nothing is forever.  There is always a way back. #RA #prednisone #prednisonetaper #mctd #spondy #eoe
  • arthriticchickI told 3 doctors and a nurse that I was ‘at breaking point’. No one took me seriously, because everyone forgot that fast prednisone dose changes can cause psychosis. My immunologist is the person who ordered the taper, because she is concerned that I have a rare form of leukemia, and I have to be off prednisone completely before she can do the bone marrow biopsy to find out. The risk of cancer trumps adrenal insufficiency every single time. So no, I’m not stupid, to the person who told me I was. Just very physically ill and under immense pressure, with and endless supply of impossible decisions. A fast prednisone taper tipped the balance. But a few people have asked, genuinely kindly, why I am tapering so fast, and why don’t I just stay on a safe doses of prednisone. That’s why. Potentially very serious diagnosis, that no matter how rare, has to be ruled out. Seems I’m an object lesson in rare side effects sometimes, but I did ask for help. I told 3 doctors I was not coping. True, I made a rash of poor decisions that ended in a psychotic episode. But so did my doctors. Recovery isn’t linear. It’s a 3 steps forward, 2 back kinda thing. All the reasons I broke down are still in play. I’m at 2mg of prednisone and I still need to keep tapering. And my next blood test, in 10 days will be all important. If my eosinophil count is higher again, that won’t be good. But the answer to the other burning question? Yeah, my hair is cute. Change is good. And even if it’s horrible, it grows back. Its just hair. Nothing is forever. There is always a way back. #RA #prednisone #prednisonetaper #mctd #spondy #eoe

  • mickeygeorgeYour hair is very cute :) I hope you get the answers you need very soon my friend.
  • accordingtokenzOh, friend. I am so sorry to read of these struggles that are so viscerally affecting you right now. If I can do anything at all, please let me know. You are being prayed for. Nothing is forever, indeed! 👊💛
  • arthriticchick@mickeygeorge thank you. I really want to see you before you go on your adventure if its not already too late
  • arthriticchick@accordingtokenz thank you. Your prayers snd kindness are very much appreciated Kenz.
  • mickeygeorge@arthriticchick will FB message you :)
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