Polycythaemia, Hydroxycarbamide and statins

I have been living with a diagnosis of Polycythaemia since 2018. My blood levels are well controlled with Hydroxycarbamide and I have been on the same dose for over 3 years. My GP has recently noted that my cholestorol levels are a little elevated with a HDL/LDL ratio of 4.3 - so nothing major. However he is suggesting I start on statins. I am reluctant because I have read that statins can impact platelet levels. Moreover I read that in countries where Hydroxycarbamide is too expensive for high dosage use that they prescribe statins in combination with a similar overall effect.
My worry is that if I start taking statins then will my blood counts drop significantly and required many months of tinkering with the Hydroxycarbamide dose to get back to a stable situation.
Does anyone else have any experience of this situation and what was the outcome for you?

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Hello there @JeremyS, welcome to the forum! Sounds like you’ve lived well with Polycythaemia vera (PV) for a few years now—gives me hope with my own Polycythaemia vera (PV).

Since diagnosis last year I’ve taken daily hydroxyurea like yourself, and have had a relatively easy time with it. After surviving a heart attack many years ago (caused by a clot) I’ve taken daily aspirin and a statin and haven’t experienced any noticeable issues with those, or since adding in hydroxyurea.

My family doctor tells me that despite my being vegan and thus not eating cholesterol I still have hypercholesterolemia and the statin helps keep my levels in the normal ranges. Between her and my haematologist they’ve prescribed these medicines and haven’t mentioned any contraindications or negative impact on my blood cells such as platelets, although I’m interested to know what you’ve read. Are statins meant to increase platelet production? Mine have remained ‘normal’ since diagnosis.

I understand why you might be hesitant to add another medicine into your regimen if it’s going to change the dosages of ones you’re used to. I’d say talk it over with your haematologist as they’re presumably trying to minimise side effects from the Polycythaemia vera (PV) rather than complicate them.

From what others around the forum have said, it sounds like some GPs haven’t even heard of Myeloproliferative neoplasms (MPN), let alone know how to offset potential symptoms and side effects. I’d check with your haematologist for reassurance.

Do please let us know what you decide and any information you learn as I’m selfishly interested!

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Hi @JeremyS welcome to our forum and I reckon you ask a question many of us get concerned about.
I have several conditions and last year I was prescribed a statin, due to another condition, which I decided to take and so far it has bot affected my Chronic lymphocytic leukaemia (CLL) blood results.
Obviously we are all different.
I will copy your post to the Blood Cancer UJ nurses @BloodCancerUK_Nurses
Do ask all your fears, questions and practicalities at your next appointment and ultimately the decision is yours.
Please do let us know how you get on and take lots of care of yourself

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Like you, I have policythaemia and control platelet levels with hydroxycarbamide.
I also had triple heart bypass surgery 2.5 years ago and find myself on statins even though cholesterol wasn’t bad.
Also have high blood pressure.
Hydroxycarbamide steadily controls platelets at 200-300 as required

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Hi Duncan,
Good to hear that statins go well with Hydroxycarbamide. My worry is that adding statins to my existing drug dosage will lead to lower hermatacrit levels and possible anaemia as a result. I would then have to start juggling a reduction in my Hydroxycarbamide to get back to “in range” blood counts.
My concerns were prompted by this report on a long-term trial examining whether statins could be used in polycthaemia patients to lower the dosage of high-cost drugs like hydroxycarbamide in “low and middle income countries”.

Don’t seem to be able to add hyperlinks here so you’ll have to copy and paste the URL from the above screenshot into your favourite browser.
I’ll be making a decision sometime in January so will post info then. In the meantime have a good Christmas!

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Hello again @JeremyS, thank you so much for sharing such interesting research. I recognise you from the Blood Cancer UK website! Thank you for going public about Polycythaemia vera (PV) and sharing your experiences with BCUK, they helped me and you’re helping again here.

Hopefully this link works: Atorvastatin, Aspirin, and Hydroxyurea for an Effective and Low-Cost Treatment in High-Risk Polycythaemia Vera - European Medical Journal

Its conclusion gives me confidence in my treatment: “This accessible, effective, and low-cost therapeutic strategy could improve adherence to treatment and the overall survival of high-risk patients with Polycythaemia vera (PV) in resource-limited countries.”

Funny to think that I’m having this exact low-cost treatment in a supposedly developed country—but then the US is a big old mixed bag of contradictions! Healthcare can be shockingly bad here, depending on which part of which state you’re in. I get the impression from other forum members that my beloved NHS has its struggles in some regions too. Sounds like you have good care, which is a relief.

I understand your concerns about developing anaemia should you add in a statin. From what some others on the forum who live with Polycythaemia vera (PV) have said, they’ve been able to receive iron infusions when their ferritin levels were very low, helping to offset anaemic side effects of removing blood and cytoreductive medicines.

Perhaps it depends on how agreeable our haematologist is? I know of other forum members who have not been able to access iron infusions. I had my ferritin checked this year and it’s thankfully not low enough for anaemic side effects to bother me and not high enough to increase my haematocrit. Quite the Goldilocks zone!

If I developed anaemia I’d likely ask for an iron infusion rather than mess about with my hydroxyurea dosage. Like you say, juggling the amount of chemotherapy taken, no matter how ‘mild’ our doctors might like us to believe it is, would not be my preference either!

Thanks again for sharing this @JeremyS, I hope a decision becomes clearer for you. Have a lovely wintery time where you are too :snowflake:

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