After four rounds of anti-body therapy nearly everything is coming into normal range but my bone marrow still is not producing erythrocytes. I still need blood transfusions to maintain haemoglobin levels. I have had these for seven months now and I have iron overload.
Has anyone had experience of Exjade/iron chelation?
I'm going to have another bone marrow biopsy to discover why erythrocytes are not being produced. Does anyone have any idea of what the possible causes could be?
There is one viral infection, which is often sub clinical, that can cause red cell aplasia. It's more common in children but is seen in adults, it's Parvovirus B19. I had a little google to make sure my memory was correct and came across this old case report from the Blood journal reporting 'Pure red cell aplasia due to parvovirus B19 in a patient treated with rituximab'. Here's the link: bloodjournal.org/content/96...
In this reported case the serologic test was negative, but the PCR returned positive for parvovirus B19 DNA. He was treated with 30 g intravenous immunoglobulin (IVIg) weekly for 3 weeks with a good result and ongoing remission from the aplasia.
Of course, it may not be Parvo but, depending on what the bone marrow looks like, it's worth testing for.
Hopefully, your doctors have done the basic tests for haemolysis to rule that out before they do the BMB and parvo testing.
Regarding the chelation, it's very necessary as iron overload can quietly lead to heart failure, diabetes, joint pain, tiredness etc.
I have a similar concern about Red Blood Cell transfusions and iron overload, and whether one then needs to use Exjade to remove the iron by chelation. I would like more info on whether RBC transfusions are known to cause iron overload. Because my doctors say they don't. But I am not so sure.
I received 2 units of packed RBCs in June. My serum ferritin spiked in the next few days to 1454 ug/L (15-274). And then a week later it was down to 426, which is still high. I thought the reduction in serum ferritin was due to fact that it was migrating to my organs where it can no longer be measured by a blood test. Bad thing! My ferritin has been measured monthly for the last 2 years. My ferritin levels are normally very low, between 19 and 48. So this spike following the 2 bags of RBCs sure seemed like it was due to the transfusion.
I received another 2 units of packed RBCs on July 31. Four days later, my ferritin was 122. At least that is back in the normal range.
My doctors said my ferritin spike following that first transfusion was the result of me having an infection. I don't believe I had any infection, and even if I did, my ferritin (measured monthly) has never responded like that before.
I will likely need more transfusions, even though I am about to start treatment. Treatment itself will suppress RBC production, whereas right now it is the CLL suppressing CLL production.
Anybody have good info on whether RBC transfusions do cause iron overload? And what to do about it? Phlebotomy is not useful if the iron has migrated to the organs. And it would only make an anemic person more anemic.
I'm surprised at your doctors' statements about red blood cell transfusions not causing iron overload, because I understood that frequent transfusions can cause it - just as this NIH paper on the need to monitor MDS patients requiring regular transfusions describes: ncbi.nlm.nih.gov/pubmed/181...
Note the conclusions: "Although the National Comprehensive Cancer Network guidelines for the treatment of patients with MDS recommend the use of RBC transfusions as supportive care, they further recommend that the iron burden of transfused patients be monitored regularly and that iron chelation therapy be considered to maintain serum ferritin levels of <1000 ng/mL."
Sadly PeterinGermany is an example.
Jackie Jm954 may be able to comment further on why your doctors have dismissed this when you are indeed seeing a permanent increase in your serum ferritin, but perhaps you just need to question them further?
You don't say how many blood transfusions you have had in total over the seven months but as few as 10 units of red cells can lead to the start of iron overload. The body has no mechanism for excreting excess iron and it is the storage of iron in cells that leads to the damage.
There are a number of tests, such as transferrin saturation levels, that need to be done to establish iron overload as ferritin is only a crude measure and is also an inflammatory marker so can be deceptive.
It may be that your doctors feel you haven't received enough red cell transfusions for you to have iron overload but there is a small chance that you coincidentally have hereditary haemochromatosis and this would exacerbate the effect of the transfusions as you would have started off with more iron stored.
All of this doesn't address why your bone marrow isn't effectively making red cells though. There is a big difference between ineffective erthropoesis and none at all. With ineffective erthropoesis, such as is seen in thalassaemia major, the bone marrow is expanded and stuffed full of erythroblasts. With red cell aplasia there are simply none or very few to see.
More discussions and testing (inc the Parvo B19 DNA on the bone marrow) need to be done before anyone could say anything one way or the other.
If you need chelation please take it, to have CLL is bad but heart failure has a much bigger morbidity rate.
Thank you Jackie! Just seeing this reply now. I am going to query both my CLL specialist and hematologist further on this iron overload question in relation to further blood transfusions. Even my GP said my enormous ferritin spike after my first 2 units of packed RBCs had nothing to do with iron overload. Which makes no sense at all!
So far, in the last 2 months, I have had 4 units of packed RBCs. Those are the only transfusion I have ever had. (It was PeterinGermany who has been transfusing for 7 months). Each time, my Hgb was down to 60 (6.0) when I transfused, and rose by 10 points per unit of blood. All of my doctors say my extreme anemia is due to the CLL (95-99% infiltration according to BMB last month). I began FR treatment 2 weeks ago. am concerned that my anemia and neutropenia will persist throughout treatment and possibly beyond, since the treatment itself is myelo-suppressive. This is why I think I may need more transfusions. But really don't want to be risking iron overload.
I want to ask one of my doctors (not sure which) for a complete iron panel, not just ferritin, before getting another transfusion.
I think the bone marrow infiltration is the cause of your anaemia and in most cases, even with high levels of infiltration like yours your marrow should bounce back.
As the CLL cells are cleared, the normal bone marrow cells will return and repopulate your marrow. However, you may need some support in terms of red cell transfusions, and injections to help your neutrophils, in order to get through each course of your treatment.
Don't worry about the transfusions at this stage, it's a short term problem and important that you feel as well as you can as you go through treatment.
Thank you Neil. Just seeing this reply now. Very helpful as I try to sort out the risks of further transfusions for my anemia.
Hi Neil,
In Germany the limit of ferritin levels is 2000 before chelation is started. Yesterday my ferritin level was 2,400 and then I had two more blood transfusions, so it is probably around the 3000 mark. My skin has taken on a nice shade of rusty iron! The iron overload may also in part explain low sexual libido and moving in range for diabetes.
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