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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Fri Feb 1, 2019, 11:31 AM
jamesramilo jamesramilo is offline
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Diagnosed with PNH after 8 Years

Hi Guys! My name is James and im from the Philippines age 33 going 34 this March. I was just recently diagnosed with PNH last Dec 6 2018 my previous diagnosis was Iron Deficiency Anemia and AIHA (idiopathic). Im currently being treated with Soliris in UAE (Abu Dhabi). To tell you the truth im pretty scared of whats currently happening before my hemoglobin is low (7.1 - 7.6) platelets is normal and WBC is normal. But now with my most recent lab test platelets is at 116 and WBC is 3.8 i asked one of my doctor about this and i was just given a vague answer. Hope you guys can share your thought and experiences. Thank you and Godbless!
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Old Sat Feb 2, 2019, 09:22 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by jamesramilo View Post
Hi Guys! My name is James and im from the Philippines age 33 going 34 this March. I was just recently diagnosed with PNH last Dec 6 2018 my previous diagnosis was Iron Deficiency Anemia and AIHA (idiopathic). Im currently being treated with Soliris in UAE (Abu Dhabi). To tell you the truth im pretty scared of whats currently happening before my hemoglobin is low (7.1 - 7.6) platelets is normal and WBC is normal. But now with my most recent lab test platelets is at 116 and WBC is 3.8 i asked one of my doctor about this and i was just given a vague answer. Hope you guys can share your thought and experiences. Thank you and Godbless!
Hi James.

Your doctor should have been more direct about answering your questions, but maybe his or her lack of concern was a good sign that your counts aren't at worrisome levels.

When did you start taking Soliris? It's not unusual for blood counts to fall before they start to respond to treatment. It take months to really know how effective the treatment is. I hope you see this type of improvement soon, but I know it may require patience.
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Old Sun Feb 3, 2019, 12:12 AM
jamesramilo jamesramilo is offline
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Originally Posted by Neil Cuadra View Post
Hi James.

Your doctor should have been more direct about answering your questions, but maybe his or her lack of concern was a good sign that your counts aren't at worrisome levels.

When did you start taking Soliris? It's not unusual for blood counts to fall before they start to respond to treatment. It take months to really know how effective the treatment is. I hope you see this type of improvement soon, but I know it may require patience.
Hi Neil . Im taking soliris for 4 weeks now. I think i should just wait its just its the first time for me seeing them low and got scared. Thank you !
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