Iron Deficiency

[Hereforalongtime]

Are many people diagnosed with PV Iron deficient at the time of diagnosis? I’ve read on the internet that almost everyone with PV is iron deficient at time of diagnosis (hence the low ferritin) and that phlebotomy makes the iron deficiency worse. My heam told me I was iron deficient before even starting treatment. Is that true? I’m guessing the rouge stem cells from the gene mutation must eat up all the iron. Little bit of a confusing process

[lizzziep]

My anaemia was getting worse and worse despite iron tablets and an iron infusion. I’m now on weekly EPO injections which are gradually bringing the counts up again. I don’t know why we have anaemia but it seems fairly common.

[rcan_pv]

The general answer, meaning it is more likely than not, is yes. This is especially true when more immature red cells are produced, typical of ET/PV patients who have been living with the disorder for some time / or those who may have a co-morbidity, such as Chrohn’s Disease.

[Hereforalongtime in reply to rcan_pv]

Thank you! Just was confused at first as to why I had all these red cells, but my iron stores were so low

[AirconBob]

PV, Jak 2+, I have had low ferratin for many years, The one time I tried taking Ferrous Sulphate (the only treatment) to compensate, my Haematocrit shot up within days, and took some time to stabilise. My Ferratin is currently 7.9, (normal range 24-337) It can make you feel tired and irritable. If I feel tired I go to sleep, I usually feel better after an hour or so. It really is one of the main symptoms of PV, so I hev learnt to live with it.

[Wyebird in reply to AirconBob]

oh no, I have Et and mine at one point went down to 12. I was light headed high something else relating to iron only allowed me to take 1 ferrous sulphate a day.. I really feel for you

[ainslie]

what you have posted is correct

[Hereforalongtime in reply to ainslie]

it really is a brutal sequence, having your marrow just grab all the available iron to make more red blood cells

[ainslie in reply to Hereforalongtime]

well , its not a gentle disease, but it doesnt grab all the iron, many are fine on venisection only with Ferritin in single figures for decades, its not a recommendation but it it goes on

[Nrl303]

Correct, it’s especially confusing when you have a ton of red blood cells, but no iron in your body

[gvibes]

My iron was normal at diagnosis (Jak 2 exon 12). But after 8 phlebotomies in 3 weeks, my iron parameters were low. So I think some are diagnosed with low iron and some not - there are alot of variables in all this. It seemed to take about 4 to 6 months of pegasys treatment with no phlebotomies for iron to get back to normal. For me, the treatment goal was to be phlebotomy free and then get the iron normal, removing those side effects at least .

The iron stuff is pretty complicated. This paper by Yelena Ginzburg explains some of it.

ncbi.nlm.nih.gov/pmc/articl...

Good luck

[Nrl303 in reply to gvibes]

“Most patients with PV present with iron deficiency at diagnosis [5, 6], even prior to the onset of therapeutic phlebotomy, the mainstay of treatment. Iron deficiency is often exacerbated by repeated phlebotomies.” I have read that paper as well very interesting. I wonder if it has to do with the exon 12 mutation

[gvibes]

it probably does have to do with exon 12. If we were to read the references 5,6 we would likely find that the studies were all v617f mutations. There just aren't many of us exon 12 folks.

I'm not sure where you are in all this, but pegasys has worked great for me. If you are new to this, make sure your hematologist is well connected to MPNs. I actually work with a local hematologist but have a doc at a national MPN center making all the decisions. In 2 years, I am phlebotomy free, consistent hematocrit < 40, and on just a maintenance dose of pegasys. From what I have seen and read, I dont think its great to go the phlebotomy alone route (unless you cant tolerate the drugs).

There is also a recent hepcidin mimetic based drug in development name Rusfertide that uses a whole different mechanism for reducing red cells by messing with the iron system- referenced in the above paper. I looked into trials at diagnosis but it wouldnt work for me. Seems like maybe it has fewer side effects.

hope things go well

[hunter5582]

It is quite common for people with PV to have low-normal to low iron. Your assessment is in essence correct. The mutated progenitor cells are using up all the available iron to make red blood cells. PV can be thought of as an iron-dysregulation disorder. nature.com/articles/s41375-...

The fact that iron is needed to make RBCs is why venesection is used to treat PV. The goal is to create a deeper iron deficiency without causing anemia Less available iron = fewer RBCs. Unfortunately, iron deficiency without anemia can have its own adverse effects. That is what happened to me. The iron deficiency symptoms were worse than the PV symptoms.

Hope that helps to answer your question.

[Nrl303 in reply to hunter5582]

ashpublications.org/blood/a...

I’ve seen this article as well. I find it interesting that a lot of them state they don’t understand it well that PV presents with iron deficiency, but you guys seem to have it down that bone marrow probably uses up all its iron stores to compensate for the additional red blood cells like you said

[hunter5582 in reply to Nrl303]

I discussed this KISS explanation with my MPN Specialist who agreed that was an accurate way to understand what seems to be happening, Iron metabolism is complex and there are multiple factors that influence it. Here is a nice presentation on it if you are interested.

youtube.com/watch?v=ahCy97F...(Not working as expected?)

[LittleLuna in reply to hunter5582]

thank you Hunter.

You do find some amazing info out there. This one will require me to watch multiple times to get my head around it and saving in my folder of important info

A

[hunter5582 in reply to LittleLuna]

I had to watch it multiple times with multiple rewinds and take notes. Iron metabolism is quite complex. Understanding it better informs our understanding of PV, so it is worth the effort.

[LittleLuna]

jeez PV is so complex, its mind numbing but trying to learn more to understand whats happening in my body so I can be informed and under more in my consultations.

Thanks so much for your help Hunter. I think i can say for lot of folk on here…you are fab and so supportive

Have a fab day 😀

[Miamistandup2020]

I had iron D but I started talking g iron still do from time to time.