Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > PNH
Register FAQ Search Today's Posts Mark Forums Read

PNH Paroxysmal nocturnal hemoglobinuria

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Feb 1, 2019, 10:31 AM
jamesramilo jamesramilo is offline
Member
 
Join Date: Jan 2019
Location: UAE
Posts: 3
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!
Reply With Quote
  #2  
Old Sat Feb 2, 2019, 08:22 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Quote:
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.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #3  
Old Sat Feb 2, 2019, 11:12 PM
jamesramilo jamesramilo is offline
Member
 
Join Date: Jan 2019
Location: UAE
Posts: 3
Quote:
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 !
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
25 years after AA, now I've got AA and PNH squirrellypoo Tell Your Story 14 Fri Dec 14, 2018 10:52 AM
Recently Diagnosed with PNH Tony123 PNH 6 Wed Jul 11, 2018 07:21 AM
Newly Diagnosed PNH ussoccer004 PNH 17 Mon Apr 28, 2014 12:26 PM
Possible Cure for PNH Tom Cramer PNH 16 Tue Aug 16, 2011 09:41 PM


All times are GMT -4. The time now is 06:21 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org