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 Mon Jul 16, 2018, 10:01 PM
JenW JenW is offline
Member
 
Join Date: Jun 2016
Location: Mabelvale, arkansas
Posts: 9
Iron overload

Hello friends, I have a new development, my iron is thru the roof. Had MRI and there is iron deposits in liver and left kidney. The Dr's have prescribed a drug named Jadenu. Just reading about the drug makes me afraid to take it. Has any of u with pnh had a problem with too much iron?
Reply With Quote
  #2  
Old Tue Jul 17, 2018, 06:13 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
Even though our experience is with SAA, John did deferral, Exjade and therapeutic phlebotomies to get rid of the iron. Jadenu was not around back when he was needing to reduce the iron. His too was though the roof. Are you still getting transfusions? If not and your HGB is above 10, consider therapeutic phlebotomies. They are faster than chelators.

John could never tolerate the full dose and eventually had to come off the Exjade completely. His doctor would start him on low dose and work up to a full dose. He never got to a full dose and even at a lower dose, would have to take a break after 3 week of being on it. Kidney and liver tests should be run frequently while on the drugs.
__________________
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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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
ASH Japanese Study on Iron Overload mesuring after allogeneic HSCT akita Transfusions and Iron Overload 0 Thu Dec 16, 2010 02:20 PM
ASH 2010 Highly Transfused MDS Patients Often Have Cardiac Iron Overload akita Transfusions and Iron Overload 0 Wed Dec 15, 2010 06:21 PM
ASH 2010 Iron Overload results in deficient Hematopoiesis akita Transfusions and Iron Overload 0 Sat Dec 11, 2010 05:43 PM
ASH 2010 Iron Overload Accelerates Development of Leukaemia - Mouse Model akita Transfusions and Iron Overload 0 Sat Dec 11, 2010 05:21 PM
Iron Overload, Liver and Heart Function Francine S Transfusions and Iron Overload 7 Mon Jun 1, 2009 02:01 PM


All times are GMT -4. The time now is 04:09 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