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

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  #1  
Old Sat Jan 4, 2014, 02:16 AM
dfantle dfantle is offline
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Ferritin drop prior to phlebotomy

I had a total of 76ish red cell transfusions prior to my MUD transplant 11 months ago. Although I was on Exjade for several months prior to the transplant, it wasn't long enough to make a difference plus I was still very transfusion dependent at that time. In December 2012, 1 month before my MUD transplant, my ferritin labs showed my level in the 7000 range, which was about 40% higher than the count several months prior. 6 months post transplant, my ferritin was down to 4000 without any chelation, and as of last week its down to 3100 (a drop of 900 in just 4 months). I had my 1st bloodletting this week as my blood counts are now so normal I'm fortunately eligible to start doing this.

Question: Without chelation treatments, the ferritin appears to be dropping significantly on its own. Has anyone else experienced large drops in ferritin, such as this, with or without chelation and/or phlebotomies? I'm wondering if this is normal or could be worrisome.

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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #2  
Old Sat Jan 4, 2014, 02:56 AM
Tii Tii is offline
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Ferritin

I was at 3100 at the initial test, then the ferritin dropped to 2700 on its own, and after the first bloodletting session I was at 2300. So apparently our bodies do get rid of it or uses some of it, but I don't think there is anything to worry unless they drop below normal levels.

Maybe its the exjade? Did you get any side effect from that drug?

All the best,

Tii, 37 yrs, MDS/t-cell leukemia. BMT 12/12 (sister donor)
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  #3  
Old Sat Jan 4, 2014, 08:37 AM
Birgitta-A Birgitta-A is offline
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Ferritin

Hi Dena,
The high ferritin value (about 7000) can depend on infections - you know the ferritin value is not connected only to iron in the blood.

Once after neutropenic fever my ferritin value was 5600 and after one month (with Desferal in connection with txs as always) it was 2800.

Lower ferritin value is a positive sign - if it isn't too low.
Kind regards
Birgitta-A
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  #4  
Old Sat Jan 4, 2014, 01:27 PM
dfantle dfantle is offline
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Smile

Thank you Birgitta & Tii.

Re Exjade. I was only on this from August-December 2012. My team prefers phlebotomies as long as the patients have strong blood cell levels to allow this. Likely I won't take Exjade again, unless the SAA returns. Physically I felt fine while on Exjade, however my creatinine became elevated so I could only take half the recommended dose.

Best
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Wed Jan 8, 2014, 12:41 AM
mausmish mausmish is offline
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My ferritin dropped from ~2600 to ~300 without intervention. My transplant doc at Johns Hopkins said it's common for ferritin to be high post transplant and come down on its own.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #6  
Old Sat Jan 11, 2014, 10:25 PM
dfantle dfantle is offline
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Quote:
Originally Posted by mausmish View Post
My ferritin dropped from ~2600 to ~300 without intervention. My transplant doc at Johns Hopkins said it's common for ferritin to be high post transplant and come down on its own.
Thank you Karen. Do you recall how long it took to drop?
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Sun Jan 12, 2014, 05:02 PM
mausmish mausmish is offline
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Hi Dena,

Here's my history. 11/19 was right before my BMT. 6/2 was my 6-month check-up. So, gradually over two years.

Name Ferritin
Standard Range 13-150 ng/mL
11/19/10 323
6/2/11 2581
12/1/11 708
12/6/12 393
12/5/13 389

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #8  
Old Mon Jan 13, 2014, 12:39 PM
dfantle dfantle is offline
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Thank you Karen
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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