So far, I’m doing okay. No improvement, but I don’t think I’m any worse. If that’s true that is very good news and could be a precursor to improvement.

I see my doctor next week on the 23 of Sept.

Overall I feel pretty lousy, with tremor and a sick stomach most of the time but nothing severe enough to make me quit.

I got braces a couple of weeks ago. They are a godsend as falling was a major issue. They protect against foot drop and knee collapse.

I have been on cyclosporine since July 22, 2010 at a dose of 400 mg /day. Can any one tell me how long it took for improvement to begin?

Ubbietom

Hi,

If you are the Alice that had successful stem cell transplantation …Congratulations.

My question is on cyclosporine. I’ve been on it for two months. My question is this. Did it do you any good?

Thanks,
ubbietom

keith,

i’d love to know more about your course of treatment.

i was dx with cidp in dec 07. i have steadily gotten worse…

tried ivig, 1 loading dose. it made me worse and so we halted it.
i’ve been on high dose oral prednisone since june– it helped/helps– but the side effects are becoming intolerable. 5 days ago, i began cyclosporine.

it seems it has done wonders for you. are you on any other medications? can you tell me how many mg you take? what has your experience been? do you feel your disease is in remission?

i am taking 325mg daily. i have felt some new aches and pains from it– did you? i am also full of energy that comes into conflict with my pain level. meaning, i want to do more in life then my pain allows. i wonder if that is a side effect that will subside as my body gets used to the drug. also, i am still on some prednisone, 30mg now. my neuro wants to wean me off of it but wants to 1st see that the cyclosporin will have efficacy…

hope to hear from you,
alice