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Old Sat Aug 17, 2013, 11:57 AM
BobbyJD BobbyJD is offline
Join Date: Jul 2013
Location: New Jersey
Posts: 11
Cyclosporine without ATG

Hello, was looking for some personal experiences with Cyclosporine on its own without another round of ATG. My sister's counts have been trending down for the past 6 months (ATG + Cyclo in 9/2010). Counts were pretty good after treatment, but now Platelets are around 50, white and red low but not dangerous and neutrophil below one I think.

Just had a BMB a few weeks ago and there has been no mutation in the disease and chromosomes are normal. That being sad she has just started taking Cyclo again this week to hopefully push the counts upward.

Any one have a positive or negative experience using just Cyclo alone to raise counts?

Bobby, sister dx Mild AA small PNH clone 6/2010; ATG+Cys 9/2010; slow taper 1yr+, counts good until 2/2013; BMB 7/2013 no change in disease. CsA started 8/2013 and counts on the rise.
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Old Sun Aug 18, 2013, 09:49 PM
sttery sttery is offline
Join Date: Feb 2011
Location: Boca Raton, Fl., USA
Posts: 9
Cyclosporine without ATG

I was diagnosed 4 years ago with Hypocellular MDS. Platelet counts and blood counts were low. Had a blood transfusion and platelet transfusion. Put on Cyclosporine. My counts started to go up. They have been normal for 3 years. I am now on 100mgs of Cyclosporine. However, I never had ATG. Hopefully, your Sister will do well on Cyclosporine
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Old Mon Aug 19, 2013, 12:48 AM
NLJabbari NLJabbari is offline
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
My son was dx'ed w/ SAA in 2004. He underwent one round of ATG/CsA. He was weaned and was off all meds for about one year when his numbers began to drop. Cyclosporine was restarted, but at a pretty high dose (400mg) 2X daily to stop the downward spiral. Once a trough level was established and his counts stabilized, they started a very slow wean once again. This up and down pattern has been pretty much the norm since then.

He has never been off CsA since then...
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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