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  #1  
Old Sat Oct 1, 2016, 01:47 AM
asnjs asnjs is offline
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MDS with Iron Overload

Hi, I am a new member. My husband has MDS.
I would like to receive some information regarding to Iron Overload.
My husband was diagnosed with RAEB after the bone marrow biopsy back in 2009.
His hematologist recommended supportive care due to my husband's other health issues.
He has been transfusion dependant from the end of 2009 up till now, receiving 2 units every 3 weeks,
sometimes every 2 weeks.
He has been taken Exjade.
The lab result on Sep 2nd showed his Ferritin @2468.
Last week, Sep 22th, my husband was hospitalized due to Sepsis. Another CBC / blood culture was ordered.
Now, the ferritin @6755.
Our primary care dr. wanted us to see Gastroenterology, the latest lab result which was done on Sep/27th..
the numbers were elevated
Bilirubin 9.1, Alkaline 430, Ast 75, Alt 128
The older lab result from sep/2nd..
Bilirubin 0.5, Alkaline 106, Ast 31, Alt 68
Is it possible for Ferritin to increase that high in 20+ days?
Does infection in blood cause a fault lab result?
Could you please advice / share information.
My sincere thanks.
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  #2  
Old Sat Oct 1, 2016, 10:54 AM
Marlene Marlene is offline
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Ferritin is very sensitive. It's a considered an "acute-phase reactant" which means that it any inflammation, infection, injury and even how the blood specimen was drawn/handled can cause it to jump up dramatically especially when you have iron overload. So I wouldn't worry about the spike. It does not mean that his iron load has increased by that much. You really cannot draw any conclusions from just one blood test.

When John was on Exjade, we would stop it if he got ill or injured. Bacteria thrives in an iron rich environment and since the Exjade makes the iron more available in order for it to excreted, the bacteria has more access to it. So you might want to consider, if you haven't already, taking a break from it until the liver enzymes calm back down and the infection is cleared.

Medicines can really overburden the kidneys and liver so you do have to keep a close watch on them.
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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.
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  #3  
Old Sat Oct 1, 2016, 01:52 PM
asnjs asnjs is offline
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Dear Marlene, Thanks so much for your explanation re : Ferritin.
We will stop Exjade as you suggested.
Last visit w/our Hematologist, his comment was that Exjade won't
bring down the ferritin count.
Right now, my husband is on an antibiotic for a bacteria infection.
I am very concerned regarding to the elevated liver enzymes also.
Hope and pray that his liver and kidneys are in good condition.
I truly appreciated your insight in this matter.
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  #4  
Old Sat Oct 1, 2016, 03:18 PM
asnjs asnjs is offline
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Dear Marlene, Just want to thank you again for sharing information.
As a new member, should I post my Q & A under MDS?
I'm thankful that you saw / answered my posting.
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  #5  
Old Sat Oct 1, 2016, 06:51 PM
Marlene Marlene is offline
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I think your post is OK here. All of these diseases are bone marrow failure of some sort and will be read by others no matter what their disease is classified as. These bone marrow failures all share some common issues. Having a good title for your post was helpful. But going forward, you may have other questions specific to just the MDS or just iron overload, etc., and an other category may be a better fit.

Even though the Exjade will not reduce the iron as long as he's getting transfusions, it will help keep it from increasing to very high level. I only knew of one person who was able to bring down his iron while still getting transfusion but he was on a very aggressive chelation schedule. He did IV desferral 24/7 and was able to keep ahead of the iron from transfusions.
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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.
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