Ferritin drop prior to phlebotomy

[dfantle]

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.

Thanks :)

[Tii]

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)

[Birgitta-A]

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

[dfantle]

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

[mausmish]

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.

[dfantle]

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?

[mausmish]

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

[dfantle]

Thank you Karen