statins

[Sanga]

hi

Wondering whether anyone has experience of going on statins ?

I was diagnosed with polycythaemia 2017, until 2022 was on aspirin and venesections, then as my white and platelets and symptoms got worse they put me on Pegasus for a year but was not well on it and triggered possible other autoimmune conditions which are being investigated currently.

sm now on Rux since April 24 and all seems well, feel best I have for 5 years and would almost say since pre diagnosis!

other than putting on of weight on my middle (5/6kg) I’m very happy.

however my cholesterol over the years has crept up and although I have lots of good cholesterol the GP is recommending statins.

My BMI is good I’m slim and exercise regularly. I have levelled out weight gain over the last 5 months but can’t shift it. I live healthy life. Eat an anti inflammatory diet and so on.

I don’t like taking drugs but am thinking statins may be a good option based on what I’ve read on here ?

Really appreciate your thoughts as my haem consultant has none ?

thanks

[Lemonverbena]

hi sanga,

have limited experience of rux, only just started but seems good but have run the gammet of all statins bar the injections. in reality most people take them with no side effects at all ( cholesterol can be a s/e with rux i believe) so would be worth exploring.

unfortunately my system hated them all and am currently exploring chinese mushrooms but with very little data to go on.

but i am the exception i think.

good luck

[hall2]

I was put on statins a few years ago and I’ve had no problems. I am also on Pegasys.

[Jomalile]

hi

I am taking a minimum dose of statins since about 2 years now and my cholesterol is perfect now. I do not experience any side effects at all. I thought that rux was known that it can increase the cholosterol. You can give it a try…Good luck!

[Sanga in reply to Jomalile]

One more question, which statin are you taking as there are many ? Thanks

[Jomalile in reply to Sanga]

I take the same as PepeYoung: atorvastatine, but in a lower dose. My daily dose is 10mg.

[PepeYoung]

I have been taking 20mg atorvastatin for 12 months with no side effects. At the recent MPN voice patient’s online forum, a paper presented at the latest ASH meeting was mentioned which suggested that statins may improve response to standard MPN treatments, possibly by reducing inflammation

[Arami]

Hi, I am keeping my cholesterol within the accepted range with Red Rice Yeast pills. They work great for me, no side effects. The active ingredient is Monakolina K, with 2.9 mg in each pill. I took 3 pills/day the first 3 months to bring down the cholesterol, and now I am on 2 pills/day to keep it at the safe level. Hope this helps.

[AndyT]

I started low dose statins over 20 years ago, following my ET diagnosis, as my cholesterol was a bit high and it seemed sensible to reduce that additional risk.

I haven’t had any problems that I can attribute to being on statins but did swap to a newer version a couple of years ago on my GP’s advice.

[Sanga in reply to AndyT]

Super helpful. I think I’m going to take the plunge having heard your comments and done reading around it.

One more question, which statin are you taking as there are many ? Thanks

[AndyT in reply to Sanga]

I’m on Pravastatin. Initially 20mg but now 30mg to get a bit more control - still not a high dose.

[Bluetop]

I was diagnosed with PV in 2016 and take asprin and hydroxy. Although my cholesterol readings are good and my BMI, I am aged 74 and my GP recommended statins. My haematologist also supported me taking them. I have done some reading round and (as mentioned below) seen more than one report promoting the benefit of statins for MPNs, so I took the plunge 3 weeks ago and am awaiting my latest blood results this week. Physically I have not noticed any side effects so far.

[Sanga in reply to Bluetop]

thanks everyone for your replies. Super helpful. I think I’m going to take the plunge having heard your comments and done reading around it.

One more question, which statin are you taking as there are many ? Is there one that’s suited to work with PV ?

Thanks

[Bluetop in reply to Sanga]

I'm taking Atorvastatin -which I think is the most common. I read around this and agreed with GPs suggestion --most commonly used partly because probably less likelyhood of suffering side effects. But only 3 weeks in so far.

[EPguy]

I read your older posts, your Dr is taking good care of you by switching from IFN timely as you seem to have largely reversed the autoimmune complication. There are others for whom Dr is not watching this closely enough.

I'm on Rux and likely will need a statin soon. Seems a good med for MPNs. My hubby responded really well to a small dose.

[Sanga in reply to EPguy]

Thanks. Appreciate your response. I know you had challenges with autoimmune issues. I’m pretty sure now I will start statins with all the research I’ve read. I’m feeling really well on Rux that I worry about adding anything to the mixing pot

Re autoimmune symptoms, my appt with rheumatologist yesterday showed low markers although symptoms still exist for Sjögren's and he wants me to start hydroychloroquine alongside Rux to reduce symptoms further.

Do you have thoughts on this ?

My sense is to start the hydroxychloroquine for 3 months then start statins so any side effects from one drug are isolated ? or visa versus ? Will be speaking to my gp next week

Thanks

[EPguy in reply to Sanga]

Challenge is one good description. So far at least it's singular, only one A-I issue, even if a big one.

Sjo can have no markers and still be mild to severe. Sjo can rarely go away on its own, one Sjo expert told me mine might since I had an unusual route to getting it, which we share to some extent. But I think that chance was before my Last Dose.

Having SS-a+ makes getting into trials easier, but the MPN is exclusionary for most.

We get reminded that we can't offer medical advice, only our thoughts on questions for Drs. In that context:

HCQ is generally a mild drug, and not usually considered immune suppressive. It works well for some, but it takes up to 6 months to show a benefit so patience is important. It less often helps dryness, but is known to help the joint pain and fatigue for some. It may reduce progression.

If you do start be sure to get an initial HCQ oriented eye exam from a care giver that knows what that is. HCQ long term (10+years) can cause retinal damage so regular checks are indicated. There is normally plenty of warning. Anyway in 10 years we'll have a slate of better drugs to choose.

But HCQ can less often cause or increase tinnitus, this was my experience after two weeks of it, a permanent increase, something to watch for. So I can't take it.

If I were starting both, and opted to stagger the start, I'd start the statin first since one should see results relatively fast to select the right dose. Be when ever you do start HCQ, sure to discuss the HCQ dose, it's sort of like IFN, each pt has different dose response. A good starting point is by weight.

Another thing I've learned recently is Rux may be useful for Sjo. Jak1 inhibition is a good thing for some A-I's. Tofacitinib is a Jak1 and 3 inhibitor is used for some A-I's, the Jak1 part seems to be of particular relevance. It has been trialed in Sjo and may be of benefit for at least dryness. Rux was designed specifically to include Jak1 along with our better known Jak2. So taking Rux may help with Sjo, my MPN specialist said this when I started.

[Sanga in reply to EPguy]

I’m so grateful for all these thoughts and sharing of your experience on your journey. Truly helpful. Thank you.

Will start with stains while I get confirmation of the eye test I’ve arranged.

I’m yet to pick up my prescription for HCQ as to the dose.

I’ve had such good results regarding my symptoms on Rux and only left with dryness, mouth sores, and joint pain.

Thanks again.