looking for others

[Ellen McDonough]

Hey all,


How has weaning off Cyclosproin gone for others? How quickly have others weaned? Any side effects or complications? I have SAA in partial remission since 4/2009≥Platelets never really came back. I have posted a few times the past few weeks but not much response.Just wondering how others have fared?
Anyone ever developed autoimmune temporal arteritis or any type of vasculitis during weaning?
How do Prednisone and Cyclosporin together work?
I would really appreciate some feedback.
Thanks,Denver survivor

[julestheo]

Hi Ellen,

I also have SAA diagnosed Aug 2010 treated with ATG Rabbit Sept 2010 Iwas taking cyclosporine til couple of months ago when I was changed to Cellecept due to developing Chronic Kidney disease which they think is due to the cyclosporine as it is a hard drug for the kidneys to tolerate I am doing pretty well with my new drug and my blood counts are all in normal range and my kidneys are now stable (thanks be to God).

[KimO]

My daughter was successfully treated for SAA in Dec 2007, was on a full dose of cyclosporine for about 7 months, and then tapered over about 9 months. Her counts were in normal range and then she relapsed after 14 months without cyclosporine. She started back on the full dose (300 mg) of cyclosporine, which recovered her counts within 2-3 months. Once again she stayed on full dose for about 6 months or so and then started a very slow taper -- 25 mg every 3 months. That had been going well until this last month when her counts again have started looking a little suspect. We're currently in a hold and watch phase. So far her kidneys have been fine with the exception of a stretch about a year ago when she had six weeks of sinus infection followed by the stomach flu and she got dehydrated. She has not had prednisone since it was tapered a few weeks after the original ATG treatment 4 years ago.