I am a 73 female, English but living in New Zealand for some months each year. I was diagnosed in May 24 with PV after a positive JAK 2 test. (Hb 164 and HCT 0.55).
I had two venesections and was commenced on Hydroxyurea 500mg bd . After 10 days my platelets had fallen from 275 to 7 and I was admitted to hospital for a platelet infusion and bone marrow biopsy.
Now back home in NZ I am constantly fatigued ( previously very fit, horse riding, skiing, sailing etc) and SOB on exertion. Still waiting for results of BMB and not seeing specialist until 14 August.
My iron has dropped to 4 ( Ferriton28 Trans Sat 6% ).
My query is how can the iron deficiency be treated with a diagnosis of Polycythaemia Vera when iron supplements are contra indicated.
Does anyone else have this predicament of very low IRON and PV
I have found the MPN web site extremely helpful as there are only 30 diagnosed cases of PV a year in NZ . Would the treatment be any different or advanced in the UK? Is anyone else in NZ reading this?
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Hilary777
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This is a somewhat complicated question. The general answer is that usually iron supplementation is contraindicated in PV. At the core, PV is an iron dysregulation disorder. The body is constantly trying to use up all available iron to make RBCs so it is common for someone with PV to already have low iron and high RBCs. The purpose of venesection is to make you even more iron deficient by removing the RBCs where iron is bound up. Less iron = less RBCs. Unfortunately, iron deficiency can have its own side effects even when it does not cause anemia , including fatigue.
Note that fatigue is also a common side effect of hydroxycarbamide. Thrombocytopenia is another potential side effect of hydroxycarbamide. Given that you experienced thrombocytopenia requiring transfusion, I am thinking the docs already took you off of the hydroxycarbamide.
Options for treatment will be something to review with your hematologist. Note that most doctors, including hematologists, have little experience with MPNs. It is important to consult with a MPN Specialist. Here is a list. mpnforum.com/tsr-the-list/
There are times when iron supplementation is used for someone with PV. This may be done when treatment overshoots the mark and the person develops erythrocytopenia (anemia). A short period of iron supplementation can be used but will be halted as RBCs increase to the target level.
You will need to discuss your current lab values with your MPN treatment team. Understanding the iron panel numbers is important. Here is a short summary.
Iron Panel
• Serum iron. This test measures the amount of iron in your blood.
• Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
• Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
• Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
• Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.
None of us are qualified to advise you on what your next steps should be other than to consult with a MPN Specialist, or at least with a regular hematologist. Treating a rare disorder like PV is well outside the scope of practice for a General Practice physician, Your best advice will be from a doctor with MPN expertise.
Hunter - Thank you so much. That is very helpful and useful information . I have a consultant haematologist in NZ who stopped the Hydroxyurea once the platelets fell. Appointments with her are far apart ( in months and miles) and my GP has never had a patient with PV. I have a list of queries for the haematologist when we meet next month.
Hello both. Thanks for this Hunter - my own understanding of the role iron plays in this is basic but is getting there largely thanks to the info. you have posted over time. It fits so well with my v long term low ferritin and top end normal Hb.
It looks as though hepcedin mimetics such as Rusfertide show potential for helping in the future but are in trial and still well over a year off even in the States?
Rusfertide is a very hopeful option that is still in clinical trials. It is always hard to predict when something will make it all the way through FDA approval. My best guess is at least another year, possibly several years. Hopefully, sooner rather than later since a hepcidin mimetic would be a desirable alternative to venesections.
"We are looking forward to the results of the VERIFY phase 3 study in anticipation of filing an NDA (new drug application) for rusfertide in 2025 together with our partner Takeda"
Agree. Unfortunately we can more broadly state " so many of the drugs have [... ] potentially serious side effects".
Our list of common ones, HU, Ana, IFN, Rux, all carry long tails of risks. But we are incredibly lucky to have these options, my evil A-I condition has none.
It will be interesting whether Rusf gets a black box warning, that is TBD as it enters the approval process.
You are absolutely right that it is a blessing to have treatment options for the MPN. I am also very grateful for the information on this forum and from MPN Voice - it would be a much more confusing time as a patient otherwise. I am really sorry about your other health challenges and hope over time there are treatment options for that too.
My situation was a little different to you in that I had PV with very low iron levels but high platelets. I wasn’t on any medication at that point and I was feeling pretty rough with zilch energy, breathless etc (and three kids on the go!). I was actually prescribed iron supplements. But it was a light touch remedy and very closely monitored. I’m under the team at Guy’s. So iron is possible in some circumstances and under the guidance of MPN specialists. I know there are others on this Forum who have had similar experiences. Wishing you all the best.
it’s a tricky balance if venisecting, venisection reduces iron stores, that’s the design, some are okay with that but others not. If you are on meds only your iron stores will rise sometimes to normal and of course the meds should stop your Hct etc rising. I note your platelets crashed on 1000mg hydroxy, it’s possible that it was simply too high a dose for you,some start at 500 three times a week. Getting a BMB is a good idea , what’s also important re BMB is ideally getting a expert to interpret the results.
As a general but important point it’s a very good idea to get access to a MPN expert who can diagnose you correctly, advise on best treatment for you and hopefully work with your local Haem to keep you going in the right direction, ideally you would check in with the expert yearly or sooner if necessary.
I suspect there are experts in Australia etc, if you see them once they might do zoom after that. It takes a bit of work to set up the expert thing but I believe it’s very important, in my case it’s brought huge benefits.
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