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imckinne
Thu Jun 25, 2009, 11:46 AM
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!

Birgitta-A
Thu Jun 25, 2009, 01:43 PM
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.

Marlene
Thu Jun 25, 2009, 02:01 PM
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.

imckinne
Fri Jun 26, 2009, 09:08 AM
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.