I am into my third month of prednisone and last week was bumped up to 50 mg. because I was still having progressive weakness. I have tapered myself back to 20 because of pounding heart and shortness of breath. I really hope I can take the meds and get through this. It is really rough. I am irritable, angry, weak, tired and now am getting some atrophy of my hand. I don't know what to do next, since the docs aren't really helping.
every treatment I have tried seems to bring side effects that are worse than the illness, feel like it's a bit if a guessing game for the doctors - which doesn't exactly fill me with confidence !
It sounds like you are close to my home location, what are you taking the steroids for. I was on them for nearly 5 years and have found other things that are working. Let me know.
was diagnosed with dermatomyositis about a year ago. Just started having muscle problems - waiting to go on azathioprine for the second time . See my specialist every 4 weeks but don't seem any closer to a suitable treatment.
HI...hopefully you are still reading this post. My cocktail that worked was/is 150mg. of azathioprine (Imuran) and 3 shots of ENBREL (25mgs.ea.) a week. My Ck level is down in the 200's last bloodwork..which is lower than ever; usually its been in the 1000..or higher. really seems like you've had some terrible docs. I hope you find the right one soon. Take care...
Prednisone is literally the drug from hell...not something that should be taken long term...it literally makes you crazy. never go cold turkey tho. ween off of it.
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