CLIPPERS Update February 1, 2017

[Will]

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.
Take care.
Will

[Phill]

Well done my friend I am glad your feeling ok at the mo (don't count our chickens etc) I am not too good
At the moment but have been much worse. Seeing neurologist next week ,won't achieve much but at least
He understands the illness poor gps have not got a clue not their fault. It's the relapsing bit I hate one
Day ok next rubbish . Trying to go on a cruise but the insurance co r not keen. Don't blame them. But all
My life I've travelled the world don't think many realise how much I miss it, my mother even says you should
Not moan you have had a good life , yes I agree but I want more!  Keep smiling everybody no one will ever
Understand what it is like to live in this clippers world ,except us keep smiling all the best
From Phill

[BillCrum]

Hi Will,

That sounds great and I hope the remission is on-going (I'm doing some catching up and just come across your post). The question about whether to continue meds is hard to answer. I have this conversation with my neurologist every year and currently the conversation goes:
ME: "Is my medication doing me any harm?"
DOC: "Probably not, provided the blood-tests stay clear."
ME: "What happens if I stop taking it - will CLIPPERS come back?"
DOC: "I've no idea."
ME: "But if it did come back, that wouldn't be good ..."
DOC: "No it wouldn't - you would have to restart on high-dose steroids and run the risk of long-term CLIPPERS damage."
ME: "I think I should keep taking the medication."
DOC: "So do I."
Your situation is more complicated. When I was tapering steroids I went down slower than the neurologist suggested - I think in the end it was 1mg / fortnight (or a month or something like that). My feeling - and I have no evidence for this - is that slower tapers are better. However unless you can get steroid pills in less than 1mg amounts you still have to step down in 1mg chunks whatever the interval between those steps.

I sympathize about the insomnia as I had several months of being wide awake at about 4:30AM every single day and then just having to go and quietly watch tv until some more sociable hour of the morning.

Best Wishes

-Bill