Thread: ATG Success
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Old Sun Jun 23, 2013, 10:27 PM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hi Everyone, Just want to congratulate those who are doing well on treatment. I'd like to add that personally, I think that in order to avoid relapse "A very-very slow taper of CsA" is key! Also, I don't think all CsA's are created equal and would opt for a name brand like, "Neoral" especially if you're one of the one's who might need to be on CsA "long-term" as like for years!
Again, I'm not an expert and am only sharing my personal opinion/thoughts.

We've been on this journey for 9 years and my son has only had 1 round of ATG(H) He responded at around the 6th month mark and was fortunate to obtain "Normal Counts" on all 3-lines. He was weaned rather rapidly and was off all meds for approx. 13-14 months before we noticed the decline in numbers. Rather than getting a 2nd round of ATG, his doctor once again started him at a very high dose of CsA and slowly brought it back down in hopes of a slow wean. Unfortunately, he was never again able to obtain "Normal Counts" in all 3 cell lines (WBC, ANC, Platelets, in Normal Range), but had decent counts. He currently is still on a very high dose CsA and is having difficulty sustaining his Hgb and Creatinine is slowly creeping up.

His peripheral blood shows a 20% PNH clone, yet the bmb pathology report states otherwise??? I'm confused about this, but haven't really addressed this with his new doctor as in the last year we've switched doctors from Pedi Med to Adult Med. We dismissed my son's last Adult Med Hemo as she truly was not qualified to treat AA and are now with a new doctor who we're barely getting to know, but is qualified. She believes another round of ATG would not benefit my son due to the 20% PNH clone and has recommended Bone Marrow Transplant. This will be the 3rd time this recommendation has been offered.

So, this is where we are at and why I believe that a very slow taper is crucial and in the case of a relapse, a 2nd round of ATG is better than trying to increase CsA to bump up counts. Again, I'm not an expert but I just want to share my two-cents worth.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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