[KMac]

Hi Chandra4intx,

I've been through much of what you are going through. I am close to two years post-ATG.

One thought, is that as awful as the side effects of Cyclosporine can be, they may really seem less awful to you once you are off the prednisone. I say that because personally the prednisone put me in a terrible state of mind, and made everything seem worse. I understand many people have that effect from prednisone. Also, I found it very hard to sleep on the prednisone. Once I was off the prednisone, the side-effects of the other drugs seemed more tolerable, and I was able to sleep more easily.

Are you taking anything to help you sleep? I am of the mind that it's best to take as few drugs as possible, especially since with SAA we already have to take so many, but without a strong dose (10 Mg) of Ambien each night, I literally wouldn't sleep a wink while on the prednisone. I stayed on the Ambien for months afterwards too, but now can sleep fine without it.

All that said, prednisone can be crucial post-ATG. I have a long story I won't get into fully here, but in short I had one abortive attempt at ATG, in which they only got about 75% of one day's dose into me before the side-effects became serious enough that they stopped the infusion. Since that was just a partial dose, I basically begged my doctor to let me taper the prednisone early, and regretted it because I promptly got a pretty awful case of the serum sickness. A few weeks later I redid the ATG, and that time, with the help of huge amounts of steroids, they were able to get 4 full days' doses into me as intended. I stayed on the prednisone full force for two weeks after that! For me, full dose was 100 mg/day, with a taper after two weeks, down to 0 mg/day by week 4 post-ATG (I am 5'10", about 175 pounds).

I believe you are very close to being out of the woods for the serum sickness, so it seems the time is right for you to start the taper. But, my doctors warned me that I would also probably feel crappy during and just after the taper, as my body had built up a dependency on it.

Also, I did begin to tolerate the cyclosporine better after time. My gums stopped swelling and my headaches became less severe. Unlike you, my counts improved very slowly, with the greatest increases not until months 8 and 9 post-ATG. While my reds and platelets are now near normal, my ANC has only partially recovered, and as such I did not begin my taper until 18 months post-ATG. I am slowly tapering now, down from 500 mg/day to 350 mg/day.

Sorry this is such a long post, but I wanted to give you a 'brain dump' of what I experienced. In short, what you are experiencing is quite normal in the context of this very abnormal and mysterious disease we have, and in all likelihood your side effects will improve in the weeks and months ahead. Patience is key. We have been conscripted to run a very long race, and endurance counts. But of course, figuring out how best to alleviate your side effects matters too.