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PNH Paroxysmal nocturnal hemoglobinuria

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Old Sun Apr 1, 2018, 11:11 PM
Joce0910 Joce0910 is offline
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PNH and Aplastic anemia and pregnancy

Hi everyone I am new to this. late Nov. 2017 I was diagnosed with aplastic anemia and after two bone marrow biopsy and genetic testing we found out I have PNH. The PNH is what is causing my aplastic anemia. I started therapy immediately and started on ATGAM (which was horrible). I was finally release right after Christmas from the hospital. I am on cyclosporine and promacta, I found out now they want to start me on Soliris, the doctor also mentioned she wanted me to start thinking about a stem cell transplant which we "shall discuss next month". I am extremely concern, before I was diagnosed my husband and I were actively trying to have a child obviously we are not anymore. I am concern starting on soliris because once you start she said I have to be on it for life until a transplant. The doctor said the only cure to PNH is a transplant. I am 30 going on 31, I want a child and I do not want to have the transplant if it means I will not be fertile. After reading many journals and studies I want to talk to the doctor about getting pregnant before the transplant. Has anyone gone through this situation before?
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Old Mon Apr 2, 2018, 11:48 AM
Neil Cuadra Neil Cuadra is offline
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Joce0910,

I suggest that you search these forums for the words "fertility" and "pregnant". You'll find dozens of discussions, including Pregnancy After BMT? and Aplastic Anemia and Pregnancy.

The question of fertility often comes up when transplants are being discussed. Sometimes your primary hematologist can give you information, but you almost always need to consult specialists to get the answers you need, such as the options for freezing eggs prior to a transplant.
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Old Tue Apr 3, 2018, 02:08 AM
lisa3112 lisa3112 is offline
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Hi!
Please talk to your doctor about eggs retrieval! I am lucky enough to have a 3 yr old boy. But the chances of me having another baby naturally are very low. I had a transplant 2 years ago and I am pretty much pre menapausal. I am also your age. I attend a clinic where they check my hormone levels and bone density etc. If we want another baby (which we do) we will hopefully get my sisters eggs. Be your own advocate and demand to talk to a fertility specialist about freezing eggs. Good luck! Lisa 😊
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Old Thu Apr 5, 2018, 01:52 AM
Hopeful Hopeful is offline
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Hi Joce0910.

I am sorry to read of your struggles at such a young age. Have you had a positive response to ATG? How big is your PNH clone size?

I just wanted to warn you that some experts in the field believe that pregnancy can trigger AA relapse. So be sure to talk to your doctor if you are considering pregnancy before having a transplant.
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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 Thu Apr 5, 2018, 02:38 PM
Leigh Clark Leigh Clark is offline
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Thank you for sharing your story. Here is an article published in 2015 regarding pregnancy and Soliris, http://www.nejm.org/doi/full/10.1056/NEJMoa1502950. If you would like to seek a second opinion with a PNH specialist, contact AAMDSIF, help@aamds.org or call 800-747-2820 x140. Best wishes to you.
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Old Sat Apr 7, 2018, 11:32 AM
Joce0910 Joce0910 is offline
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thank you everyone its been an emotional struggle
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Old Sat Apr 7, 2018, 11:37 AM
Joce0910 Joce0910 is offline
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Quote:
Originally Posted by Hopeful View Post
Hi Joce0910.

I am sorry to read of your struggles at such a young age. Have you had a positive response to ATG? How big is your PNH clone size?

I just wanted to warn you that some experts in the field believe that pregnancy can trigger AA relapse. So be sure to talk to your doctor if you are considering pregnancy before having a transplant.





I have no idea what is my latest clone size i started Soliris yesterday; The doctor didn't like my LDH kept climbing up; I am on clycosporine and promacta but then my hemolysis got worse in the last month and my LDH was over 550. I almost denied the soliris because I read once you start your on it for life unless theres a stem cell transplant
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