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Old Sun Oct 6, 2019, 09:50 AM
Alex McGriff Alex McGriff is offline
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Join Date: Oct 2019
Location: North Carolina
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Alex McGriff

Hi. I am a 30 year surviving and remissed Aplastic Anemia patient from North Carolina recently diagnosed with PNH. Worked as a successful Engineer since 1994 and currently 48 years old. Currently trying to resume normal worklife.
Just finished my 3rd infusion of Soliris. Ldh has decreased from 1500 to 247, hemoglobin of 12. Clone size 68%. Platelets 170. Anyone with info on the
effectiveness of Soliris and work life with PNH, please reply and please feel free to reach out to me at 862-223-1382. Feedback much needed and Thanks.
Alex
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Old Sun Oct 6, 2019, 06:49 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
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Alex,

You may want to post this under the PHN forum on this site also. Some just look at threads specific to their disease.

A 30 year remission from SAA is pretty amazing but sorry to hear you have a high PNH clone. We have no experience with PHN but I'm sure someone will chime in.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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