Statins

[Sashie]

Hi there everyone, I’ve been living with ET for 2 years now & am currently on 500g daily dose hydroxycarbamide , 2.5g lisinopril for slightly high blood pressure & 75mg aspirin. My GP wants to put me on statins now for high cholesterol ( 8.4) & I just wondered if there are any risks associated with this ?

[Bazzak]

I have ET and have been on hydroxycarbamide 500mg , 75mg aspirin and statins for 5 years with no problems. My Hospital heamatologist knows this and said it's not a risk, hope this helps.

[Sashie in reply to Bazzak]

Thanks Bazzak , that’s very helpful

[WileyFrench in reply to Sashie]

And I’ve been taking hydroxy every day (500 one day alternating with 1000 the next) for over 4 years for ET. Also take low-dose aspirin and clopidogrel. Other than the latter two (which are blood thinners) allowing some spectacular bruising if I whack a body part on something solid, I’ve had no issues either.

[Pennypen in reply to Bazzak]

I had a Calcium score test and my reading was 48 and I heard that if you had a score under 100 there is no need to take statins. All of us have our own levels of cholesterol but your does seem to be high. Mine was 6.7 and my doctor wants to put me on them too but I am not so sure.

[hall2]

I am on statins and other medication as well as Pegasys and it’s been fine.

[Deefen]

What are your triglycerides? That’s more important than the total cholesterol. I’d also have a coronary calcium score.

[dabs121]

I have ET and am on HU and Aspirin daily as well. My cholesterol was usually around 5.5 and my GP advised me to take statins too. Like you I wasn't so sure. I read the book "A Statin Free life" by Dr Aseem Malhortra, which is an easy read and unless you have had a heart attack or stroke, really casts doubt on taking statins. I told my GP this and also asked if I could have my coronary artery calcium scoring checked, as it would give the best prediction of my having a heart attack or stroke. I had also read that the genetic Lipoprotein(a) may predispose me to heart disease and asked if I could be tested for this too?

My GP checked with a cardiologist, as she was not aware of these tests (slightly alarmingly) and I was told that it couldn't be done on the NHS in the UK and that she and the Cardiologist still recommended I take statins! With watching my diet, my last cholesterol was down to 5.1, so I have decided not to take them at present. At some point I may have these tests done privately.

Let us know what you decide to do.

David

[Sashie in reply to dabs121]

Thanks so much for such a comprehensive reply David . I’ll definitely read the book which will hopefully help me reach a decision. My heart disease risk is low so think I’ll start making a few tweaks to my diet in the meantime.

[dabs121 in reply to Sashie]

I meant to say, have a look at this QRISK3 risk calculator too, it can be found here qrisk.org/three/ and may help you decide what is best for you. This is another one the mayo Clinic have as well. statindecisionaid.mayoclini... I found it interesting to try both of them and see the difference with or without statins.

If your looking at diet, this an interesting page from a book with the cheery title, "How Not To Die" by Michael Greger, MD., suggesting that a single serving of Brazil nuts once a month may bring your cholesterol down. It's simple to try and who knows, it may help. I'd be interested if anyone else has tried this tip?

Best of luck, David

Brazil Nuts & Cholesterol reduction

[Sashie in reply to dabs121]

Adding Brazil nuts to the shopping list now !

[Hopetohelp in reply to dabs121]

I’m off to buy some Brazil nuts😂

[Murdoch01 in reply to Hopetohelp]

The ones covered in chocolate please x

[Wyebird in reply to dabs121]

Coronary artery calcium test!I’ve never heard of it. Is it a blood test? I had a stroke and my cholesterol was not above range. They could not give any explanation apart from cholesterol was high for me. ( it wasn’t related to ET)

[dabs121 in reply to Wyebird]

I hadn't either, until I read Dr Aseem Malhotra's book, "A Statin Free Life". I have attached an extract where he mentions this. I don't think my GP had heard of it and it is not available on the NHS so you may have to seek it privately if you wished t have it done. I haven't had it checked yet but am seriously considering it. For the moment I'm enjoying a few brazil nuts!A quick web search throws up articles about it and here is the conclusion from one in America - Assessing 10-year ASCVD (atherosclerotic cardiovascular disease) risk on the basis of traditional risk factors is useful for managing patients at the low or high end of the risk spectrum. CAC (coronary artery calcium scoring) is a reliable marker of subclinical ASCVD; its presence or absence and its amount and distribution are powerful prognostic indicators that can help physicians reclassify patient risk status when appropriate. In CACS > 0 patients with borderline or intermediate risk, CAC is considered a class IIa indicator for guiding patient–clinician discussions about whether to begin statin treatment [3]. Notably, in CACS = 0 intermediate-risk patients, statin therapy can be deferred due to overall low 10-year risk, with emphasis instead on lifestyle modification. - onlinelibrary.wiley.com/doi...

Coronary Calcium Score

[Wyebird in reply to dabs121]

Aaaggghhhh mmmmmm 😋I love chocolate brazils!

[Sashie]

Thanks very much for all your responses , it’s been very useful for me . I’ll probably go down the statin road just reluctant as it will probably be lifelong. Did anyone try altering their diet first ? I’m already vegetarian mainly ( occasional fish ) but willing to go vegan rather than take more pills !

[Auggie17]

I have been on a statin for many years and have tried to use diet instead of a statin and it has not worked. I have ET Jak2 and have been on Hydroxyurea urea for a year. I am taking 20 mg Lipitor and have no problems but I had a stent put in my renal artery due to plaque build up two years ago so I am too scared to not take the Lipitor now. I honestly have had no issues in the last year taking both.

[Sashie in reply to Auggie17]

Thanks for that Auggie. It’s reassuring to know that statins work perfectly fine for many people. The list of possible side effects did give me some cause for concern!

[MPNBlog]

Hi Sashie. Here's my experience in case it is of use for you. 8.4 sounds high. Mine was 7.2 at its highest. I was able to reduce it to 5.4 after diet modification (Oats every day (porridge);Heart active milk 750 mls daily; about 20 mls Virgin Olive oil daily). If I didn't stick to that it went back up again, and in the summer the porridge was boring. Haem prefers to have bloods as normal as possible and suggested low dose statins. I then read that low dose statins are anti-inflammatory and highly recommended in MPNs regardless. So I am taking low dose statin 3 times/week and my cholesterol is sitting in the 4's. Here's an article that includes something about that:

Perspectives on interferon-alpha in the treatment of polycythemia vera and related myeloproliferative neoplasms: minimal residual disease and cure?

Hans Carl Hasselbalch and Morten Orebo Holmström

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

Published online 2018 Sep 10.

Quote from this article: Studies are ongoing to elucidate if statins, which have been suggested as potential useful agents in MPNs due to their anti-proliferative, anti-angiogenic, proapoptotic, and not least anti-inflammatory capabilities [179, 180], may also enhance the efficacy of IFN-alpha2 in MPNs. Taking into account that patients with MPNs have a 40% increased risk of second cancers [105], and statins have been shown to reduce cancer-associated mortality by 15% [181], their role in the treatment of MPNs certainly deserves to be investigated in the future [179, 180].

[Sashie in reply to MPNBlog]

Thanks for that very useful info. My diet is already pretty good - porridge for breakfast , blueberries nuts & seeds etc . Cook with olive oil . Think main downfall is probably cheese & occasional chocolate ! Cholesterol seems to have gone up 2 points over the course of a year which is slightly worrying. Tending to think I should try the statins for a couple of months & see what happens !

[Wyebird]

I had a stroke 10 yrs prior to ET. I’ve been on statins and clopidogrel ever since.

[amhann]

Hello Sashie - I’m ET JAK2+ on hydroxy + aspirin - I would rather not be on them, but my cholesterol is the ‘evil,bad’ sort which runs in my family + all the oats + blueberries in the world won’t bring it down! so statins are pretty much at the top of my list for risk management (I only needed a low 10mg daily dose to bring mine down from over 8 to just 4) - did find that 1 particular brand was causing me muscle and foot pain - as long as I keep clear of that brand I’m fine with them. Very best Anne- Marie x

[Sashie in reply to amhann]

Thanks for that info Anne - Marie . I’ve decided to try statins (at least in the short term). They’re starting me on quite a high dose comparatively-40mg which will hopefully do the trick !

[amhann in reply to Sashie]

Fingers crossed for you - once the levels are down hopefully you will be able to get that dose tweaked x

[JabON]

Similar to Bazzak. I started on statins only a couple of months ago . I am on 1000mg Hydroxycarbamide and 75mg aspirin daily. My haematology nurse added the cholesterol test to my regular blood test as I hadn't been tested for over 5 years . It was simpler and quicker than getting tested separately via the GP. It was 8. Will be going to the lipid clinic to see if it is familial as 3 other siblings also on statins . not due to my lifestyle as far as we can determine. Had to stop the statins during the Covid Antivirals .