Guest guest Posted September 26, 2005 Report Share Posted September 26, 2005 getting off prednisone was one of the hardest things she had ever done. I guess my question to Kim and others is why? Immaj, I hope that you were titrated off the prednisone slowly. What happens when you take prednisione is that your adrenals shut down making "cortisol" and so when you go off prednisone, your adrenals have to be trained into making it's own again. I know that when I went off pred, It took 2 1/2 years. That was because for every 5mg I went down, I'd have a relapse of symptoms, the inflammation would come back even more intense, my breathing felt like I was trying to lift an elephant off my chest, and concentration-- what is that? So we ended up going down 5mg, sometimes, 3 mgs, sometimes back up for a month, then down slowly again. Prednisone is not a drug you just quit. You can truly put yourself into adrenal shock. The adrenals control your "fight/flight" response, your heartrate, your body temperature, your hormones, your brain chemicals (along with the pituatary and hypothalmus glands) so it is so important to listen to your body when you are getting off the drug. Most of us with multi-system sarc have a relapse in our sarcoidosis, and if we don't listen to those body signals-- then we end up in this hell we have now-- ns. Hope this explains, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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