Statins and MDS

[Devjon]

Hello friends.

It's been quite quiet in here, though I have the forum " pinned " as a browser tab and check in on quite a regular basis.

The story is about Statins and MDS. I'll be 75 next may . I was diagnosed in 2013 so I'm doing exceptionally well. I have a question to ask about the use of Statins among MDS patients.
A few weeks ago I was called in for a " wellness " check by my GP surgery. This surprised me as I have access to my GP record ( which is excellent for keeping track of incidents and looking back at all the tests that were performed as the medical proffession sought a diagnosis for my symptoms )

My GP record showed that I was due to be called back next year for an over 75 checkup, so I was surprised to be called in early. I attended and was seen by a charming Nurse who asked me various lifestyle/ family history questions, took my blood pressure and tested my cholesterol.

As the Nurse was entering all the data into her computer she remarked that I was remarkably fit for my age and she expected my score to be below 10. I don't smoke, no family history of cardiac problems, drink very little, excercise regularly ( running, cycling, hiking ) have been a vegetarian for 60+ years etc and my cholesterol level was 3.1. She then said " Oh, that's strange, your score is 27.2, you have been referred to the Doctor for Statins "

The skeptic in me was immediately suspicious, I'm very much aware of haow the use of Statins has seen a markedly positive outcome amongst the general population, I'm also aware of the fact that Statins are a lifetime medication, and that the recommended cholesterol level at which they are prescribed has dropped over time, making more people eligible for prescription, and more ongoing profit for the Drug companies.

I'm also aware of the Statin " Scare Stories " promoted by the red tops. I have a friend who has been on Statins for several years with no adverse effects, and another who had to immediately stop taking tham due to extreme side effects.

I decided to dig a little deeper and have various articles in the Lancet and other reputable publications, the overall opinion is that the use of Statins is a major benefit for the vast majority of people with high cholesterol.
Of real interest was an American study which looked specifically at patients with MDS who also took Statins. It was not a proper clinical trial, but an analysis of historical data among several hundred MDS patients. The results seemed to suggest that there was a significant improvement in survival amongst those who were taking Statins. Of course there are many questions that need answering about the variables and the sample group, but I found it an interesting topic.

I'm tempted to attend the follow up appointment that has been offered, simply for the opportunity to question the methodology of the initial check up, and discover what triggered the offer of Statins.

After that convoluted preamble, my question is, are there any MDS patients here who are also taking Statins, and what are their experiences?

Kevin

[chris]

Hi Kevin

That certainly sounds surprising - given your excellent diet and lifestyle and low cholesterol level? I thought that statins were only prescribed when people had levels over around 5.5 - but, as you say, that may have changed-hopefully on the basis of evidence!

I’d certainly query your score and ask to be shown how it came to be so much higher than both you and even the nurse expected? Dare I say Demand a recount?! There seems to be an online version of the QRisk3 questionnaire that GPs use.
https://qrisk.org/. Maybe you could slot in your responses and check it? The only thing I couldn’t work out when I did it was the standard deviation of blood pressure readings. I’d have to revisit my A level Maths for that!! Even without the data, mine came out at 10% which is what I’d expect with my barely register-able cholesterol count?!! Similar to yours though I think they use the HDL/LDL ratio which is different?

I also found this update about GPS lowering the criteria. https://www.pulsetoday.co.uk/news/clini ... -guidance/

It’s hard to know what to do as one can never be sure if you will get side effects or not, nor what the benefits would be within the 10 years they are talking about? I have 2 friends on statins who both suffer with terrible, painful leg cramps, causing them to leap out of bed at night in agony. Despite muscular problems being listed as a side effect both their GPS have told them it isn’t a side effect. So who knows?!

Like everything, we have to weigh up the benefits and risks and I think it’s great that you are so analytical and curious about it.

Let us know the outcome!!

Chris