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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sat Sep 26, 2015, 10:57 AM
TASHMAC TASHMAC is offline
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Location: Cayman Islands
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PNH increasing in size post ATG

I suffer from AA and in November 2012 when first diagnosed with AA my PNH was less than 1% in size. I had ATG (horse) and my AA went into remission. Then my AA came back and I had ATG (rabbit) in May of this year. IN April of this year we checked my PNH clone and it had increased in size to 4%. Post having the rabbit ATG my PNH clone has continued to grow and as at now it is 12.33%. I am just wondering whether anyone else has seen there PNH increase post having ATG and whether it eventually decreased in size? Or whether anyone has seen their PNH rapidly increase in size like mine appears to be doing.
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Old Sat Sep 26, 2015, 03:53 PM
GoodDay5150 GoodDay5150 is offline
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Hello TASHMAC. I had classic PNH, so I was never diagnosed with AA or anything else. I do know that sometimes AA can go away and come back as PNH, and that sometimes PNH can preclude AA. I also know that PNH presents itself in a lot of diff ways w/ diff symptoms. Good luck in your treatment.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Sat Sep 26, 2015, 06:50 PM
Hopeful Hopeful is offline
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Hi TASHMAC,

This article may help relieve some of your anxieties. It observes that PNH clone size can peak 3-6 months post ATG and then decrease again. If your LDH remains normal, that is good!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895030/

Hang in there!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Sun Sep 27, 2015, 10:00 AM
TASHMAC TASHMAC is offline
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Thanks for providing that link Hopeful.

At this stage I have had elevated LDH, at its peak it went to about 402 and I have been suffering from hemolysis. However, interestingly enough, as my PNH clone has been growing my LDH has been decreasing (now it is 266) but my hemolysis is ongoing as HGB is only 9 and has been hovering around this level for about 2 months. My retic count (and absolute retic) have been consistently elevated around 4 to 8. In the last month my MCV has also been trending upwards it is now 120. I had a BMB last month and the good news is that no mutations were present.

It is just so confusing.
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