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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Thu Nov 7, 2013, 12:33 PM
curlygirl curlygirl is offline
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PNH in white vs. red blood cells

Hello! My son's PNH is secondary (probably) to his Aplastic Anemia. Back in June prior to his ATG he was tested for PNH and had a 19% clone, but the page I had didn't distinguish amongst the type of cells. He had a follow-up test two weeks ago that actually broke the clones out. The totals were: 2% red blood cells (RBC), 5% granulocytes, and 12% monocytes. It also said that the RBC clone had increased since June, but the white blood cell (WBC) clones had decreased. For some reason I thought that PNH only affected the RBCs, maybe because it often caused hemolysis. My son did have hemolysis a lot prior to his ATG treatment, but now I'm surprised to see that his RBC clone would have been lower than 2% to cause that level of hemolysis. Can the WBC clones also be the cause of hemolysis? I guess I'm curious about what happens when white blood cells have PNH clones. My son always does have high monocytes. They were 13% prior to his ATG in June, and were 9% at his last visit this week.
Thanks!
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Old Thu Nov 7, 2013, 01:27 PM
Heather8773 Heather8773 is offline
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Curly girl
The clone size is determined by the WBC because of the hemolysis (destruction of the RBCs) going on with the RBCs they arent considered to be able to give an accurate clone size.that's why they go with the WBCs. If I remember correctly the Granulocytes is what they use to determin the clone size. So 5% ? I'm unsure about the monocytes. Maybe someone eles knows here or you can also ask on pnhdisease.org
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Heather, wife of Ronald age 31; dx PNH 2012; Dx VSAA 2013; previously on eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets.
Now -pentam,vorconizole,valtrex, valcyte, actigall, multivitamin, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
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  #3  
Old Fri Nov 8, 2013, 03:29 PM
curlygirl curlygirl is offline
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Thank you, Heather! I have to admit I've been less focused on the PNH than on the AA that my son had/has. I think they're adding the monocytes in with the granulocytes, so a 17% clone now. One doctor explained that the monocytes eventually turn into granulocytes in leukemia patients so maybe they get lumped together. Take care!
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Old Sat Nov 9, 2013, 10:12 AM
Heather8773 Heather8773 is offline
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O that makes sense thank you! Yes as soon as my husband was dx w AA we were a little less focused on the PNH also. His Solaris seemed to be keeping the PNH steady but the AA was all over the place.
We were told if he does ATG it will probably make his PNH clone go up. It did a little also.
Hope your sons doing well!
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Heather, wife of Ronald age 31; dx PNH 2012; Dx VSAA 2013; previously on eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets.
Now -pentam,vorconizole,valtrex, valcyte, actigall, multivitamin, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
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