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?
Hello there @JeremyS, welcome to the forum! Sounds like youâve lived well with Polycythaemia vera (PV) for a few years nowâgives me hope with my own Polycythaemia vera (PV).
Since diagnosis last year Iâve 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) Iâve taken daily aspirin and a statin and havenât 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 theyâve prescribed these medicines and havenât mentioned any contraindications or negative impact on my blood cells such as platelets, although Iâm interested to know what youâve read. Are statins meant to increase platelet production? Mine have remained ânormalâ since diagnosis.
I understand why you might be hesitant to add another medicine into your regimen if itâs going to change the dosages of ones youâre used to. Iâd say talk it over with your haematologist as theyâre 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 havenât even heard of Myeloproliferative neoplasms (MPN), let alone know how to offset potential symptoms and side effects. Iâd check with your haematologist for reassurance.
Do please let us know what you decide and any information you learn as Iâm selfishly interested!
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
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 wasnât bad.
Also have high blood pressure.
Hydroxycarbamide steadily controls platelets at 200-300 as required
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 âin rangeâ 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 âlow and middle income countriesâ.
Donât seem to be able to add hyperlinks here so youâll have to copy and paste the URL from the above screenshot into your favourite browser.
Iâll be making a decision sometime in January so will post info then. In the meantime have a good Christmas!
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 youâre 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: âThis 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.â
Funny to think that Iâm having this exact low-cost treatment in a supposedly developed countryâbut then the US is a big old mixed bag of contradictions! Healthcare can be shockingly bad here, depending on which part of which state youâre 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, theyâve 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 itâs 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 Iâd 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 âmildâ 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