Home         Forums  

Go Back   Marrowforums > Treatments > Transfusions and Iron Overload
Register FAQ Search Today's Posts Mark Forums Read

Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Jun 25, 2009, 10:46 AM
imckinne imckinne is offline
Member
 
Join Date: Jun 2009
Location: Philadelphia, PA
Posts: 9
Iron Overload

My mom's Ferriten level is over 5000. Can anyone share experiences with Exjade please? Any information on how long it could take for the iron overload to have negative effects on other organs? Thanks!
__________________
Ilene, Daughter of Myrna age 76 who was treated with ATG May/June 09 with complicated outcome. Cannot tolerate cyclosporin.
Reply With Quote
  #2  
Old Thu Jun 25, 2009, 12:43 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Iron overload

Hi Ilene,
A Ferritin level over 5000 is rather high but I saw iron levels up to 22000 when I looked at the reports from the Hematology Conference i San Fransisco Dec 2008.

I have not tried Exjade (yet) but but you can see the adverse effects in this article: http://www.rxlist.com/exjade-drug.htm (page 3).

Adverse Reactions occurring in 296 Exjade-treated patients
Abdominal Pain 21.3%
Diarrhea 11.8%
Creatinine Increased 11.1 % (negative impact on the kidneys)
Nausea 10.5 %
Vomiting 10.1 %
Rash 8.4 %

These patients had not AA or MDS but other Thalassemia but I think the frequency of reactions is much the same in all blood diseases.

It is very difficult to tell you when iron overload can damage other organs. Ask for the liver tests since the liver reacts first on iron overload. Then I have had MRI on the heart to control if I had iron deposits in the heart but I live in Sweden where we pay the highest taxes in the world and nobody asks for costs for examinations or treatment (I had not a trace of iron in my heart after 40 units of blood).

Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Ferriprox (not allowed in the US) for iron overload after 40 units of packed red blood cells.
Reply With Quote
  #3  
Old Thu Jun 25, 2009, 01:01 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Do you know what her ferritin level was prior to getting SAA and how many red cell transfusions she's had. Hopefully they did a baseline when they were doing her work-up for SAA. Even though 5000 is high you need to take into consideration how long has it been elevated and that FE is an acute phase reactant protein meaning that it can be falsely elevated from inflammation, infection or fevers. If the high FE is recent, then you have time on your side regarding organ damage.

At this point in her recovery and current problems, I would not attempt to start Exjade. Exjade messed with my husbands kidneys and digestion. He never got to full dose and had to come off of it because it kept effecting his kidneys. If she has had long standing iron overload from hemochromatosis versus SAA then you have another issue and I would explore a more aggressive, short term use of IV desferral. Organ damage usually takes 10 years for an adult. The very young and old may be less.
__________________
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
  #4  
Old Fri Jun 26, 2009, 08:08 AM
imckinne imckinne is offline
Member
 
Join Date: Jun 2009
Location: Philadelphia, PA
Posts: 9
Iron overload

Thanks for the responses...I was previously aware of the hemachromotosis issue because my husband has been diagnosed and is phlebotomized. I beleive they have run the genetic test but I can't seem to get the results amidst all the crises we've dealt with over the past 6 weeks. Her Ferritin was already up to 780 the first time it was checked...after only 3 red transfusions so i was already concerned. Honestly, I've lost track of the number of transfusions but it must be somewhere around 20 units by now. I'm understanding that her numbers have gone up more quickly than might have been expected. Unfortunately, we're not terribly hopefuly that she will go into remission from the ATG treatment - since she can't tolerate the cyclosporin at all. Right now our main priority is helping her to recover from the brain bleed and other side effects from the ATG.
__________________
Ilene, Daughter of Myrna age 76 who was treated with ATG May/June 09 with complicated outcome. Cannot tolerate cyclosporin.
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 01:20 PM
ASH 2010 Highly Transfused MDS Patients Often Have Cardiac Iron Overload akita Transfusions and Iron Overload 0 Wed Dec 15, 2010 05:21 PM
ASH 2010 Iron Overload results in deficient Hematopoiesis akita Transfusions and Iron Overload 0 Sat Dec 11, 2010 04:43 PM
ASH 2010 Iron Overload Accelerates Development of Leukaemia - Mouse Model akita Transfusions and Iron Overload 0 Sat Dec 11, 2010 04:21 PM
Iron Overload, Liver and Heart Function Francine S Transfusions and Iron Overload 7 Mon Jun 1, 2009 01:01 PM


All times are GMT -4. The time now is 11:41 AM.


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