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 Sun Nov 15, 2020, 06:41 PM
Junior48 Junior48 is offline
Member
 
Join Date: Nov 2020
Location: New York
Posts: 2
PNH Clone increase/treatments/symptom mgtm

Hello, sister, 27, mild AA since approx 2010. ATG in 2011, cyclosporine since then. PNH clone increased (i think about 60%) now. Now on high dose blood thinners, no soliris treatment yet. not transfusion dependent.

Questions are, monthly female cycle and high dose blood thinners wipe out iron levels, any recommendations on management (besides iron supp)? Has anyone taken the newer drug, ultomiris (ravulizumab) from the same pharma company that produces eculizumab? is this really an indefinite treatment, has anyone successfully been able to discontinue it? this might situation dependent, but are major health insurers covering majority of the cost?

From what i gather, once a patient makes the cross over from AA to PNH they dont typically regress back and will have to manage the PNH from there on out?


any other feedback appreciated. thanks,
__________________
JR, sister dx with AA 2010; ATG 2011; PNH clone increase in 2019[60%]; current treatment; blood thinner/Cyclo
Reply With Quote
  #2  
Old Mon Nov 16, 2020, 01:44 PM
GoodDay5150 GoodDay5150 is offline
Member
 
Join Date: Sep 2014
Location: Centennial, CO
Posts: 133
Yes sir. I am not a medical professional, but I had PNH for man years b4 being diagnosed after my symptoms became very severe. That was in April of 2011 and I was transplanted later that year. My hemoglobin and red cell counts were so low that a general practitioner quickly and wisely referred me to a hematologist. It is my understanding that AA is fairly likely to come back as PNH, but I was only diagnosed w/ classic PNH. I took oral iron supplements after being diagnosed, and I think that someone told me that iron injections can be more effective. As far as Soliris is concerned, an HMO doctor was going to administer it to me b4 my transplant, but then decided against it. In my opinion, my disease was so far advanced that it probably would not have been that effective. As you probably know, PNH symptoms can range from almost non-existent to life threatening. If your sister is not aware, there are some great resources avail. online. They are

https://rarediseases.org/rare-diseas...emoglobinuria/


https://pnhsource.com/?gclid=EAIaIQo...SAAEgJOXPD_BwE

I was part of this study

https://ashpublications.org/blood/ar...-After-Reduced

we all wish your sister success in her treatment


Mario
__________________
MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
Reply With Quote
  #3  
Old Wed Nov 18, 2020, 10:41 PM
Junior48 Junior48 is offline
Member
 
Join Date: Nov 2020
Location: New York
Posts: 2
Thanks

Thank you Mario.
__________________
JR, sister dx with AA 2010; ATG 2011; PNH clone increase in 2019[60%]; current treatment; blood thinner/Cyclo
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
PNH mentioned in TV show The Good Doctor Marrowforums PNH 2 Tue Apr 10, 2018 02:01 PM
Increased PNH clone post ATG TASHMAC AA 3 Mon Jun 22, 2015 02:52 PM
Small Clone of PNH SAA Mom PNH 10 Thu Aug 22, 2013 11:43 PM
PNH Webinar, September 2009 Marrowforums News and Events 0 Mon Sep 14, 2009 05:43 PM


All times are GMT -4. The time now is 06:49 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2020, 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