Quote:
Originally Posted by TASHMAC
Hopeful, I honestly have no idea and at this point in time don't know whether I should just go straight for ATG or keep with the cyclosporine. I the back of my mind I seem to think that ATG again is more toxic on my body than long term cyclosporine - would appreciate your thoughts in this regard.
|
I wish I knew what the right thing to do was! I agree that ATG is pretty toxic and there is always a risk that you could have a serious complication from the procedure. On the other hand, if you have to go this route, I know that there are a bunch of success stories from people who relapsed after too fast a taper and had a successful 2nd round of ATG.
Personally, I am not anxious to go through ATG again, but I am also growing less optimistic about long term cyclosporine as a salvage treatment. Have you heard of success stories from people that were on long-term cyclosporine? Success stories to me are 10+ years survival after relapse with kidneys still intact
I remember Dr Young gave a great presentation a few years back where he talked about why ATG was not a cure. He showed that they had found the clone of bad T-cells that were beaten down after ATG, but remained in the marrow in small numbers, nonetheless. I wish they did a similar study with long term cyclosporine usage. Wouldn't it be interesting to see whether the clone continued to grow (but at a slower rate) or whether it stayed small (or got smaller) while on cyclosporine.
I am interested in what your doctors have seen. At my next appointment, I will ask my doctors what they have seen in practice and will report back