It is encouraging to see someone 6 mo. out with positive things to say. I am less than a month out and miserable.
I had my CK treatment in three sessions, last one was April 22.
I was given Decadron 4 pill per day. on the first day of the treatments.....did a pretty fast taper (on 1/4 pill per day now, almost done with taper), because I experienced major muscle loss, a sugar spike, confusion and psychosis while on it, so we (Dr's, at my insistence as well) have decided I have to get off this drug to try to preserve my muscles in my knees/legs and also some sanity.
I am now beginning to have headache, tenseness in temples, ringing, teeth kind of feeling weird....head feels like heavy. Smiling feels weird.
I am afraid of the fact that going off the steroids will make all of these new symptoms my new problems. Feeling like I have to choose between muscle wasting and insanity and insomnia OR facial twitching, teeth pain, headache, and who knows what else. Feels really early to have all of these complications. I see a lot of posts about surgery and facial issues and pain, but not much for CK.....so do I need to back on Decadron and be crazy and not use my legs?? I am just scared of these two options. Any help? Hope?
