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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sat Jan 3, 2009, 03:52 PM
Lynn del Lynn del is offline
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Join Date: Apr 2008
Location: Port Chester, New York, USA
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newly diagnosed PNH

Hi everyone,

I've had AA for 10 years and was tested for PNH and they said I have a small clone. Does anyone know how rapidly the percentage of mutant cells take over or grow? I'm getting ready for rabbit ATG and cyclosporin, I hope this works. Lynn del
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  #2  
Old Tue Jan 6, 2009, 04:02 PM
Susan Susan is offline
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Location: Chicago, Il
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Response to Lynn

Hi Lynn,

I'm sorry you were diagnosed with PNH. PNH is highly variable, it is said that no two patients are alike. The clone may stay same for a very long time and may not get bigger. It may though. That's why PNH specialists recommend a flow cytometry repeat periodically. The most important advice I can give you, and I want to stress the importance of this, is to see a PNH specialist. You may not need any treatment but the specialist can educate you more on PNH and let you know what to do should you develop certain symptoms and what symptoms to look for. Then the local hematologist and the PNH spec can work together in managing your care.

What state are you in, I'd be happy to give you some expert's names if you like. Marc listed some in a PNH forum post, you may want to see his post as well. You can also contact the AA & MDS Fdn for a contact list, www.aamds.org

Suz
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AA/PNH Dx 1998, Warfarin, Soliris
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  #3  
Old Tue Jan 13, 2009, 12:44 PM
Lynn del Lynn del is offline
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Location: Port Chester, New York, USA
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thanks

Hi Sue:

Thanks for your reply. I saw Dr Castro at Sloan Kettering and he is suppose to be a PNH specialist. I was told that I have a small clone but I wasn't told the size or the results of the LDH test. I was very upset when I was told with such a lack of information. I called many times to talk with someone but I still didn't get the results. That was 3 weeks ago and I'm still having pain at the site, my hip and shooting down my leg. I've had many BMB before and I have never had this much pain for so long. I'm suppose to go for the rabbit ATG when they get the results from the BMB. Any information would be helpful. I have gotten much information from a very compassionate friend.
Lynn
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Old Mon Aug 31, 2009, 04:55 PM
nan nan is offline
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Location: Morriston, FL
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PNH specialist Dr. De Castro

Hi If you go to pnh support group you will learn a lot more there so much info good luck hope you are doing well my husband has had PNH for 20 years or longer. NANCY
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Old Mon Aug 31, 2009, 04:58 PM
nan nan is offline
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PNH specialist Dr. De Castro

tHAT DOES SURPRISE me that Dr. De Castro didn't tell you more he is a really a good PNH specialist maybe he didn't have a lot of your medicals records ?You can email him to find out more.
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