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Boy oh boy, this is a little rough. 60 mg of prednisone a day is a big dose. Started off easy but over time it has gotten harder. I finally got my sleep under control, with sleeping aids and a change in the prednisone manufacturer. I was having a reaction to what one manufacturer was using for tablet filler. At least that is what my doctor and pharmacist thought.
I can't tell if the symptoms I'm feeling are the result of the treatment or the underlying CLIPPERS. It will be a few weeks till my dose starts tapering and we'll see.
Had bone mineral density study last week and a blood test looking at liver enzymes. BMD normal and liver enzymes a little out of whack. Nurse suggested I stop or drink less beer to bring enzymes under control and I think my liver will just have to buck up.
I've had to stop working. My neurologist is working with 2 researchers from the Mayo Clinic and they are reviewing my biopsy. We'll see and I'll report the outcome of that. It has been recommended by a neurologist from Johns Hopkins that I get a CT of the Chest/Abd/Pelvis. I think this is just a fishing trip but I'll go along. To be scheduled next week.
Sorry for the rambling story. I am very lucky to have a strong relationship with Mary and a few close friends. Mostly my symptoms are centered around poor balance, difficulty talking, numbness in legs and arms and general tiredness.
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