It has been a while since I updated my CLIPPERS status. My MRI in October showed I was in complete remission. No evidence of inflammatory lesions in the brain stem or the cerebellum. This is great news and coincides with my subjective health. Now the enduring maladies (dysarthria, limb ataxia, and motion instability) that I continue to experience can be chalked up to effects of the medication, the brain biopsy scar, damage from the lesions or old age (I’m now 60).
I am in a conundrum about my medication. Should I stop it, at least lower the dose, is it the reason for my remission, is it the cause of my continued maladies? I have been and continue tolerating the medications (14 mg/day prednisone and 2000 mg/day CellCept). I had one relapse a few years ago and had to increase my medications. It was scary. I had gone to low to quick. Now my wife and neurologist want me to taper slow. They are thinking slow as in 2-3 mg decrease per year! Too damn slow for me! But still I worry as this disease process is notorious for its remission/relapse cycle.
My vision is less wonky. Sleeping is still an issue. I seem to be developing insomnia. Lowering the prednisone dose and maybe changing the timing may help. We’ll see.
In the last 15 months I’ve lost 50 lbs (22 kg.) and am concentrating on my health and fitness. This has become my full time job. Exercising 5 days/week and trying to go for long walks on the weekends. My balance has improved some. I haven’t fallen in 4 months. I still don’t trust myself to attempt bicycling. Bicycling was a passion in the past. This year I hope to give lake kayaking a go.
I hope you are well. Being loved by someone close.