Ferritin and Transfusions (and a bit on epogen)

[Chris-A]

Hi all,
I'm new to the site/forum but just reading through all the threads in this Forum has been very enlightening! I hope you don't mind my novice question and would certainly appreciate any thoughts & answers. :-)

I have a family member who just had a few iron infusions, preceded by 3 transfusions over the last 3 months. He is anemic, but after his last RBC transfusion in Feb, Hb was between 10-11 (Hb was 7.9 or so in January). Again his ferritin was a bit low in January, but low-normal all last year. Anyway they gave him Fe infusions and now his ferritin is 715. Oh, he is also a heart patient. I don't think the Fe was really the problem because he has been anemic even when Ferritin is normal, but with a few diff specialists in the mix it was suggested.

(Q1) I see everyone talking about pretty high Ferritin levels when speaking of overload. But I'm wondering if it is possible to start have iron overlaod even under 1000. My family member seems to be symptomatic (color change, some short of breath, ab pain) so I'm wondering how do we figure out if there could be Fe overload damage.

(Q2) If more blood transfusions are needed (i.e. I guess they want to do it if Hb is less than 9), then is it wise to start some of the chelations methods (i've read about here) at the same time so the ferritin doesn't continue to rise? If I got this, it seems Desferal is safer for the kidneys than Exjade?

(Q3) Do any of you also have experience with administration of "Epo" or Epogen? I think the doctor suggested trying that before more RBC transfusions. THis is a bit new to me, but I think I saw someone else mention it on a thread. Does ferritin need to be as closely monitored if dealing with Epo versus RBC transfusions?

[Birgitta-A]

Hi Chris,
A ferritin value less than 1000 is not supposed to give iron overload symptoms. Actually the latest research shows that it can decrease the bone marrow function but not give symptoms from liver, heart, pancreas and so on http://abstracts.hematologylibrary.o...urcetype=HWCIT
If the ferritin value is too low (1000 for Desferal and 500 for Exjade) iron chelators can have a negative impact on the eyes and hearing.

You are right about Desferal being safer for kidneys than Exjade but many patients don't have any kidney symptoms when they take Exjade http://www.rxlist.com/exjade-drug.htm. As you can see 11 % of the thalassemia patients got increased creatinin showing a negative impact on the kidneys.

Many patients start with EPO before transfusions. If your own serumEPO is more than 500 (mine was more than 800) only very few patients have a positive effect when they take EPO. Sometimes you get a better effect with EPO if it is taken with Neupogen or similar drugs
http://www.anemia.org/professionals/...onid=14&topic=
I think that the ferritin level should be controlled before transfusion but not if you take EPO – it is the iron in the transfused red blood cells that leads to iron overload.

Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal and Ferriprox (not approved in the US) for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[Chris-A]

Thank you for your reply Birgitta-A. It is a great relief to hear some answers.
I am reading all of your information and will take it to the doctor.

One other question, before starting chelating have doctors done a MRI or a biopsy to say if there is iron overload? Is this necessary?

[Birgitta-A]

Hi Chris,
Most doctors only look at the ferritin value and the liver tests, that increase when there is too much iron. Then the prognosis of the patient is important - they don't start chelating therapy if the patient has a very severe disease.

I have had MRI of the heart and liver to examine iron overload. At that time I had got 44 units of packed red blood cells and had no traces of iron overload in the heart or liver. MRI is not so common as far as I understand but I live in Sweden, where we have the highest taxes in the world and no one looks at the costs of treatment or examinations.

Do you mean biopsy of the liver? I think you risk bleedings and that liver biopsy should only be done in clinical trials where they look at the effect of different iron chelators.

Hope your relative will have a positive effect of EPO !
Kind regards
Birgitta-A

[Chris-A]

Thanks again Birgitta. Sweden sounds great, I mean it!

Are the liver tests, liver function tests, done from blood examinations (like the ferritin)? I think because of the existing heart disease, I want to be very cautious that he is monitored so we can maybe avoid serious Fe overload (that's why all the questions). Yes I did mean biopsy and thank you for your answer, makes sense.

Just throwing this out there in case you have any experience or information, but have you ever heard of EPO being used even if there is a chance of mild bleeding? This is of course an odd question but the doctor said that the daily aspirin my relative takes might cause mild bleeding (which of course doesn't help with the bone marrow issues). But then I wasn't clear if EPO can be started? It can be difficult trying to coordinate with all the different specialists.

[Birgitta-A]

Hi Chris,
You know now when I have MDS I am thankful for all help from my hospital - due to the supportive treatment I am asymptomatic 3 years after dx.

Yes the liver tests are liver function tests. You know the liver has a very good reserve capacity – you will manage well with 1/3 of the liver left. The problem with iron overload is that when the liver doesn’t manage to handle the iron the iron will cause damage in other organs for example the heart.
http://www.mayoclinic.com/health/liv...N=why-its-done

I think it is better to try EPO than transfusions – have you asked about your relative’s Serum-EPO initially? If it was more than 500 the EPO treatment probably won’t have any effect.

Do you know your relative’s platelet count – if it is low Aspirin can be a problem because it decreases platelets?

EPO appears to increase the risk of thrombotic events and mortality in patients at risk:
http://www.drugs.com/ppa/epoetin-alf...ietin-epo.html

Yes, it is really very complicated to coordinate symptoms, treatment and adverse effects. In any case you don't have to worry about iron overload already - hopefully your relative can be treated with EPO with good effect!
Kind regards
Birgitta-A

[Chris-A]

Thanks for all the info. I talked about liver function tests with my family member so hopefully we can get some tests (although I dislike the idea of too many blood tests when the blood seems so precious).

We had a doctor's visit today and EPO seems like the next choice. However, oddly, the nurse told me that no pre EPO serum will be measured. I was very confused, because when I asked again, they said no it isn't done. I'm not sure how to address this or convince them. Is it any different than another blood test, more expensive??

Their platelet count is low, under 100,000x10–6/L. But they have to be on aspirin because of the heart. The doctor didn't mention if this was an issue with the EPO.

[Birgitta-A]

Hi Chris,
You know we have about 5 L blood so tests really don’t have any impact on our haemoglobin.

Good with EPO treatment but it is strange that they don’t look at your relative's own EPO production because it is well known the response is better when the patients own EPO production is low:
http://bloodjournal.hematologylibrar...full/106/3/768

I don’t know if the EPO test is expensive but the drug is expensive like all treatments for our disease .

You should follow the platelets carefully – most patients manage very well with platelets more than 50,000 but they can be dysfunctional and then the patient can bleed even if the count is more than 50,000. It is complicated with Aspirin medication in a MDS patient.
Kind regards
Birgitta-A

[Chris-A]

Hi Birgitta,

I'm going to use the link you provided and broach the subject of th pre EPO serum again. I think the nurse might have said the test was expensive, but like you noted, can't be more than the actual medicine!

If I may ask, in terms of following the platelets (excuse my learning curve) carefully with the administration of EPO, is it more ideal to have the platelets higher or lower (in terms of the EPO)? I might be a little mixed up...

Plus, when you got EPO did you get the infusion or the subcutaneous shots? Someone said the subcutaneous injections have some issues, but this is what the doctor is proposing.
As well, do you know if people get blood transfusions while on EPO, at the same time? The nurse said this can be the case, but would that be safe?

thank you for all your input, it means a great deal.

[Birgitta-A]

Hi Chris,
You know EPO may cause trombotic events http://www.procrit.com/procrit/impor_safe.html
but I think that is uncommon in MDS patients specially in those patients that have decreased platelets. The problem for many MDS patients (like me last count 54,000) is that we have much too low platelets.

I think most patients prefer subcutaneous shots since you can take the shots at home – I have been taking Neupogen for my white blood cells at home 2 injections a week during 20 months and will probably need the drug the rest of my life.

Yes, many patients don’t need transfusions when they take EPO but others need transfusions though the transfusion interval can be longer.
Kind regards
Birgitta-A