[Lisa V]

I don't mind sharing at all, Leung.

Ken never reached normal ranges following his first ATG, but he was tx-independant for about a year. His best counts were Hgb 10.9, WBC 2.6, Plt 29k, a little over a year after treatment. Perhaps he would have eventually normalized had he not attempted to taper off the cyclosporine. His doctor took him off it very quickly-- he went from 200mg/day to 100 for a couple of months, and then nothing. His counts started plummeting shortly thereafter, and resuming the cyclo by itself did nothing to stop it. He was soon back to being transfused every couple of weeks, so he had a second ATG 18 months after the first one.

His doctor felt that since he had shown a response to horse the first time, and hadn't had any serum sickness or other adverse effects from it, that it would be best to repeat the horse rather than switch to rabbit. That way we could keep the rabbit in reserve in case the horse ever stopped working. He did double the dose, however. The first round had been given over 5 days, and the second one was for 10 days. He responded more quickly the second time (tx-independant at 5 weeks compared with 10 weeks), and has reached much higher levels in both his red count and platelets this time. I'm sure part of this is because he hasn't attempted another taper (in doing another BMB during the relapse, they discovered a trisomy 8 mutation that they hadn't seen earlier, and there seems to be some evidence that those patients are usually dependant on cyclo indefinitely, so he's been taking it for over 6 years now).

His second ATG was in February '06, and he was also getting weekly procrit shots until his Hgb reached 12.5 a little over a year later. We gradually tapered the shots, and it has held up fine since then. Last count was 14.2. His platelets have continued to rise very slowly: 50k at 9 months, 100k at 32 months, latest count 132k. Our lab considers anything over 130k to be normal, and this month is the first normal reading he's had, nearly 5 years after treatment! His WBCs have been the least responsive line-- they didn't crash with the other two, but have never reached normal either. In the last couple of years his WBC has ranged between 2.9 and 4.0 (but will spike a bit more when he has a cold or infection).

I don't know how much of this is relevant to your niece, Leung, but I hope some of it helps.