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 Sat Sep 26, 2015, 10:57 AM
TASHMAC TASHMAC is offline
Member
 
Join Date: Oct 2012
Location: Cayman Islands
Posts: 56
PNH increasing in size post ATG

I suffer from AA and in November 2012 when first diagnosed with AA my PNH was less than 1% in size. I had ATG (horse) and my AA went into remission. Then my AA came back and I had ATG (rabbit) in May of this year. IN April of this year we checked my PNH clone and it had increased in size to 4%. Post having the rabbit ATG my PNH clone has continued to grow and as at now it is 12.33%. I am just wondering whether anyone else has seen there PNH increase post having ATG and whether it eventually decreased in size? Or whether anyone has seen their PNH rapidly increase in size like mine appears to be doing.
Reply With Quote
  #2  
Old Sat Sep 26, 2015, 03:53 PM
GoodDay5150 GoodDay5150 is offline
Member
 
Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hello TASHMAC. I had classic PNH, so I was never diagnosed with AA or anything else. I do know that sometimes AA can go away and come back as PNH, and that sometimes PNH can preclude AA. I also know that PNH presents itself in a lot of diff ways w/ diff symptoms. Good luck in your treatment.

Mario
__________________
MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
Reply With Quote
  #3  
Old Sat Sep 26, 2015, 06:50 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi TASHMAC,

This article may help relieve some of your anxieties. It observes that PNH clone size can peak 3-6 months post ATG and then decrease again. If your LDH remains normal, that is good!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895030/

Hang in there!
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #4  
Old Sun Sep 27, 2015, 10:00 AM
TASHMAC TASHMAC is offline
Member
 
Join Date: Oct 2012
Location: Cayman Islands
Posts: 56
Thanks for providing that link Hopeful.

At this stage I have had elevated LDH, at its peak it went to about 402 and I have been suffering from hemolysis. However, interestingly enough, as my PNH clone has been growing my LDH has been decreasing (now it is 266) but my hemolysis is ongoing as HGB is only 9 and has been hovering around this level for about 2 months. My retic count (and absolute retic) have been consistently elevated around 4 to 8. In the last month my MCV has also been trending upwards it is now 120. I had a BMB last month and the good news is that no mutations were present.

It is just so confusing.
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
Dropping counts, 4 years post-ATG Logain AA 16 Tue May 24, 2016 01:22 PM
Increased PNH clone post ATG TASHMAC AA 3 Mon Jun 22, 2015 01:52 PM
Cyclosporine after ATG for AA PNH Matt R Drugs and Drug Treatments 0 Fri Feb 27, 2015 03:59 PM
Prednisone post ATG? dfantle AA 4 Tue Apr 3, 2012 01:13 AM


All times are GMT -4. The time now is 11:11 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