I was diagnosed with PMR in November 2023. Initial dose was15mg now after a few ups and downs and with the help of a very supportive doctor now down to 9.5
This morning I received an email from the doctors surgery suggesting that I might benefit from some statins to reduce my risk of heart attack or stroke. Apparently I don’t have to take this up now and can defer it for some time in the future. I have my review with my own GP at the end of April and feel it would be good to wait until I’ve discussed it with him.
Any advice would be gratefully received
Thank you ❤️
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Yorkgirl2
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Hi like you I was advised I should consider taking statins - something I thought I would never do. However in my case my blood test did show my Cholesterol level had risen to what was considered just above the borderline. I was quite miffed as by choice I have always maintained a very healthy diet and exercise regime. This forum as always offered a lot of support interms of experiences. but I also had a very good conversation with the GP practice pharmacist who suggested I try the minimum dose of 10mg (instead of the normal 20mg) Having weighed up the risks of aneurism, stroke etc I also have with inflammation of my arteries from this illness, I decided to go with it and have been fine. My cholesterol level quickly fell below 6 to take me under the threshold and I've just had my 3 monthly check and it's down around 5.2 Not as low as they would like but taking everything into account the pharmacist suggested I stay on this dose at present. So many decisions we have to make and not always easy to know what to do for the best but hope you find the one that's right for you.
I have PMR since 2023, I also have HBP, this has increased with the use of Pred so another HBP tablet was introduced. The other side effect has been my cholesterol has risen over this time and I started taking a statin 4 weeks ago. So far introducing this doesn't seem to have affected my PMR so I am happy to continue taking it and will see if it's reduced my levels in 2 months when have my bloods done. It is always a personal choice adding in more tablets but my thoughts are if they help me with a better quality of life so be it.
Not sure if this will help and others with more knowledge and expertise will be able to help.
Has this been prompted as part of a general/annual review or have you recently had a blood test that shows raised cholesterol? It is a side effect of pred.
It very much depends on the person - some people find statins worsen their PMR symptoms and may even have triggered it, others are able to take any statin without problems and some can take one statin but not another. A few have tried as many as 4 before finding one they tolerate well.
Now you have asked you will see related posts -and probably get as many different replies as members. Really it depends on your medical history -so do some research. There a lot out there, much conflicting.. but at the end of the day it’s your decision,
I have started reading this from Amazon "A Statin-Free Life: A revolutionary life plan for tackling heart disease – without the use of statins" Heart specialist who trained in Edinburgh wrote it. Like you I didn't think statins were my thing and even though I have just started the book I still don't! There seem to be a lot of myths around cholesterol etc.
Phil Hammond - that well known comedian. Gosh - hadn't realised he was that old!
I think the main point though is that statins do SOMETHING that reduces the risk of CVD - and lowering cholesterol is a marker for its effect. Not sure cholesterol itself is always the evil thing it is claimed to be. Except in the hereditary hypercholesterolaemia disorder. But that is another story.
Ach yes - the link I got when I search it was confusing and it looked as if it was PH but I was lazy and didn't load it. Mea culpa!!!
I used to be very impressed by Aseem Malhotra in his early days but then he seemed to stray and become conroversial for the sake of being controversial. And some things don't match with the available evidence.
Yes. if you look at the forward in the book , the doctor that recommends it does point out that if people are given statins because they have had a heart attack , stents or have. diagnosed cardiovascular problems they should take the Statin. Although, as you progress through the book Malhotra , himself , is more controversial and seems to jump full footedly into the anti big pharma debate which seems to be more for the sake of wooing the reader , and seems a bit disingenuous for a trained doctor whom his more than happy to use other medications.The Anti Statin books all contain the same caveat, usually written in the forewords that most people tend to skip , because the ideas they endorse are more to help generally healthy people to reduce the need for statins in the future or people whom don't have cholesterol issues like Familial Hypercholesterolemia and have been properly assessed for cardiovascular/ stroke risks.
There is an awful lot of this stuff circulating in the last few years that this that or the other isn't necessary - drugs and supplements alike. And very often it has a grain of truth BUT - only a grain: mostly it is true for the worried well but there are large cohorts who will benefit from whatever is under discussion because they have risk factors or are deficient. Currently it is ZOE and Spector shouting that vit D doesn't do anything, But when you read all the papers, it turns out that it does in anyone who is deficient or is on medication that depletes it - like pred. But that little caveat is always tucked away in a corner or not mentioned.
The concept that statins should be forced on anyone is appalling - not in MY drinking water thank you - but they do have a role for a very large population. If you have any plaques in arteries, statins stabilise them and tiny bits are less likely to break of and go travelling until they get stuck in a side road in capillary land and cause a stroke, heart attack or PE. Reducing cholesterol in the blood also reduces the formation of those plaques so effectively is preventative medicine. I'm happy enough to take something that isn't causing me side effects and is proven to be safe. Which is the case (at least, to a great extent) and NOT the case for many supplements.
I do find it bizarre that what they read in the DM, saw on TikTok or heard on the grapevine is felt to be more valuable than proper medical opinion. But the boundaries are becoming blurred ...
Have you got Netflix ? I'd suggest watching a new series called , " Apple Cider Vinegar" , it's based on a number of true stories and does show that the green health industry is equally at fault in putting making money ahead of Medical Truths or the health of their customers.
They also have a very good series based on Oxytocin.
Both show identical parallels in the way they treat patients or use stigma and patient shaming to make the person believe that it may be their fault for a treatment not working . In many ways , this is often more callous and a real assault on a person's mental health when used by the alternative or "green" health industry.
It's something I have always believed but the series's really brings it home in technicolour.
I'm not a supporter of Zoe.
They've used people's collected data during a time of crisis to find a way to fudge together the general advice on various general health concerns into a system which they heavily charge access to.
It's amazing really , they charge the person to give them all the data they'd usually have to pay heavily to obtain via research.
In reality , anything Zoe offers can be received for free by looking at recommended health sites or using free weight management apps.
Their " research" if read correctly is marginal and has no significant results or benefits from the products they produce and sell when tested on generally healthy people , yet they still promote the unnecessary use of CGMs and sell mixed seeds products at the unit price of platinum dust.
And they can do all of this because they seem to be endorsed by the Government just because they used their app during the pandemic for data gathering.
Like you , I can't understand why people will put their whole heart behind trying something that's promoted in an unresearched book or on tiktok but will dismiss advice from conventional medical sources as incorrect or " fake news".
I suppose it does come down to that period of acceptance when you get you first health condition that requires long term medical support.
We have all been there and gone through that period of denial.
But for some , the fear of taking a medication and stigma they believe it creates , means they will try any type of " natural" cure desperate to find something other than a tested prescribed pill that means they must accept a change to their " Old Normal".
Sadly , that opens up many people to being vulnerable to trying unsuccessful treatments for some time before accepting they need medical support , often meaning their condition gets much worse and harder to treat in the time in-between.
Not that I'm against using exercise , diet and some medically recommended supplementation and therapies ( I use them ) but I know they only add to my Self Care , they aren't treatments for health problems on their own , they aren't cures, they just complement the medical care and make it easier to cope with.
I took a year trying other options to statins when I had high cholesterol, as I showed above , but at the time I didn't have other Cardiovascular needs to take them. Doing that though it meant I actually ended up with a proper diagnosis of Familial Hypercholesterolemia on my notes , most people don't because they start the statins straight away.
No, not got Netflix - really not my style. And I don't need to be told what I have known for years - the bottom line is money and I don't have any truck with most supplements either. ZOE was good at the start - my nephew worked for them briefly and was "sold" the commitment at his interview and initially but he didn't stay long. But then it became about profits from a gullible public.
And things change - as I said below. What was accepted truth 15 years ago has been questioned and that is for the average Joe Bloggs difficult to understand. We were just discussing the role CGMs can have for patient orientation on diet and TRE in the management of diabetes. No, you don't need them for long, 2 weeks is loads to identify your problem foods and times. And you don't need to finance TS's lifestyle either - I commented ages ago that I couldn't understand what had taken him so long to identify something as not as good as he'd thought. As a medic, he did the same physiology as I did and at a similar time really, he is 6 years younger than me but I went to med school to do physiology at about 24 or so, about when he'd have gone. These were things I have known for YEARS.
Strange though - in the 70s when I was working in the field, a patient with a very high cholesterol was always suspected as FHC until proven otherwise. Has it all got a bit lost with appalling diets and ease of starting statins?
I'm sure I read an NHS article a few years ago that said most women probably don't need to take statins but I can't find it now. Whist searching for it I found this instead, which seems a useful read from a reputable site and presents different side of the argument. Looks like the Jury is out to me
Looks like the Jury is out to me. I've personally decided not to take statins on top of all the other things I'm on and the complications of statins including they can actually bring on or exacerbate PMR. I'd probably feel different if I had any heart problems or was male
I would have agreed with you a few years ago but there has been further work that disagrees with both sides. It is however undisputable that for the majority of patients they do reduce risk.
Thanks for the info. Way beyond me so I'll procrastinate and put in on the back burner/kick it into the long grass for now. On a possibly related topic or posssibly not, I just heard that yet another male friend about my age (early 60s) has had a sudden heart attack, that's about the 5th man I know who's had one and had stents put in etc. Yet none of my my female friends have had a heart attack, as far as they know, although one, like you, has Afib and one has high BP even though skinny as the proverbial stick insect. Maybe that's why I'm being complacent
Please don't be fooled into thinking women don't need statin's as much as men. More women die from heart attacks than men in that they often don't have the same signs/symptoms. I have 2 female friends die under 55 one in her sleep and one in her kitchen, both could have been prevented but they both thought their symptoms were not heart issues because they didn't present like men do.
I encourage all women to research what can be presenting signs of heart health issues.
Yes I am a statin after my cholesterol shot up on prednisolone for PMR.
So true. So much was due to misbeliefs about women - and was nearly 20 years ago now, Malcom Kendrick published his stuff in 2007! Just been looking - and there was a load of "statins are dangerous for women" headlines from about 2005-2015 or so - and it seems an "against the establishment" war, the "we don't need experts" sentiment of Covid. And look where that got some people.
And a LOT of work has gone on more recently that hasn't been seen in the DM headlines.
Including research that debunks the fear mongering articles suggesting that Statins increase the risk of Dementia and Alzheimer's.Recent studies have concluded that rather than causing more risk , statins can be used in helping to delay the progression of All Cause Dementias and Alzheimer's and they are being recommended to use by the Alzheimer's and Dementias charities.
Trouble is people get a lot of faulty information from the Media whom instantly jumps on the bandwagon to bad mouth a medication and applaud the alternative health advice , but is very slow or resistant to report that their original reports were incorrect because they had endorsed the doctors or lifestyle gurus that gave inappropriate advice in the first place.
I totally get that statins lower cholesterol but haven't read enough about how that impacts on the incidence of heart disease. My cholesterol is actually higher nowadays as I eat more 'good fats' eg nuts, avocados, cheese, olive oil. From what I can see, heart disease is mainly due atherosclerosis which seems to be caused by too much sugar and junk food rather than too much good fat. But even the heart experts are all arguing with each other on that. I think if my cholesterol was high from eating processed food, hydrogenated fats, sugar etc etc I'd be mire worried. There are also plant sterols that purport to lower your cholesterol and eating loads of vegetables also seems to help. I shall continue to read, especially the latest info
Yes it becomes daunting when medicos can't agree! They would say debating! course anything that can move us on to the truth could be beneficial - just remove the ego😀.
I have family cardiac issue history and diabetes, but my cholesterol went up after I started pred when PMR diagnosed 12 months ago. I am investigating plant based lifestyle now.
Hi there, just wondered if anyone had discussed the full lipid profile with you? Total cholesterol ( which you probably know) is made up of ‘good’ cholesterol (High density lipoprotein - HDL..which is protective ) and ‘bad’ cholesterol (Low density lipoprotein - LDL), you also have those other factors of Triglycerides which statins are not really effective at sorting if the count is high. Just a suggestion but maybe you might want to discuss with your GP the ratio of HDL to LDL cholesterol. It may shed some light on whether or not you decide to go on Statins. All the very best 😊
Thank you to everyone for your replies. Statins seem to be a very divisive subject. I’m going to keep investigating it and then speak to my GP at my review. I haven’t had a recent blood test for cholesterol so not sure what prompted this latest text from the practice. I’ve also heard that doctors practices were being encouraged to prescribe statins and getting paid extra to do this so will take my time to decide
They aren't paid to prescribe the statins - they are paid for doing the checks that might lead to a decision that it would benefit you to take them. Not the same thing.
That’s good to know. The trouble is there’s so much false information out there in the press but I suppose it makes a good headline!. I trust my GP but will go armed with many questions when I have my review. Thank you
As others have said, it’s a very individual thing. Early in my PMR / pred journey I was found to have reduced arterial flow in my right leg (peripheral arterial disease), and high cholesterol. I was horrified, I’d had regular cholesterol checks via occupational health since the mid 1990s, I also believed I led a ‘healthy’ life in terms of diet, exercise etc. My GP and vascular specialist at the time (in Australia) both explained to me that a deal of it was probably genetic / hereditary - my father died at 65 of a myocardial infarction, his father before him at 54 of a stroke. What I have since learned via this website is that some of it may also have been associated with the PMR and pred.
I was started on 40mg Atorvastatin but that didn’t reduce cholesterol enough so it was upped to 80mg. The only side effect I noticed was constipation, which my GP was a bit sceptical about and wanted me to take laxatives. On returning to UK , and having got to zero pred, I discussed it with my GP here and we agreed a trial of reducing to 60mg, then 40mg, which is where I am now and surprise surprise the constipation has eased and my cholesterol levels are within whatever the current tolerance levels are. I say whatever they are as there is a very interesting book written by Margaret McCartney a Glasgow GP (The Patient Paradox) in which she poses questions about some of the current preventive / screening programmes including statins and how ‘acceptable’ cholesterol levels have shifted over time (which could of course be due to learning and scientific advances but she is sceptical).
I had planned to try a reduction to 20mg but I’ve just been diagnosed with high blood pressure and started on 5mg amlodipine so I’ll let this settle first. Sorry if this is a bit long and detailed but hopefully some may be of interest.
Ask some questions first before you choose Statin Therapy.And I am on statins. And followed this advice myself before I was diagnosed with Familial Hypercholesterolemia ( a very common, little discussed genetic mutation that means you can't remove cholesterol efficiently yourself)
Was the recommendation made based on a Total Cholesterol blood test?
Do you have a family history of Cardiovascular disease or stroke , or are you being treated for one of these conditions?
Do you have any other health conditions or take other medications that increase your cardiovascular risks ?
Sometimes GPs suggest Statin use for people with medicated Diabetes , or with other digestive conditions or a family history of Non Alcohol Related Fatty Liver Disease.
Was high cholesterol a family health issue which can indicate the FHc is part of your medical history?
If you haven't had a cholesterol test ask for one , and ask for a liver function test , kidney function test , full blood count , diabetes test, Vitamin B 12 , Folate and Vitamin D tests , all at once to get a baseline set of results to print off for your needs. These tests are particularly important to do before you begin the Statin so you can compare your results properly. You are on steroids already which means you can ask for these NICE recommended tests once a year as part of your Preventative health care.
If you haven't got your own individual cardiovascular risks, and your cholesterol levels aren't too high , try using diet and lifestyle changes , including more plant stanols / sterols in your diet. Using Diet alone to control your risks means a making much stricter choices on the amount of fat you eat , even healthy fats , and also strictness about eating processed foods and baked goods, processed sugar and sweetener ( as blood sugar swings can affect cholesterol levels).
You don't need to purchase books about Anti Statin Diets , beyond all the rhetoric , the diets and exercise choices included in them are the same as the diets in any other heart or diabetes book or website.
If you want food options that helps your health issues in general you can get Michael Moseley's recipe ideas free online and there are great recipes for all diets on DiabetesUKs website.
The occasional treat , just like on any sustainable, ' Diet for Life' is still possible but you do still need to consider portion size and fat content.
After three months of being on the diet decide if that feels like a diet you can stick to long term , and if the exercise you do you can continue as well.
Get your Total Cholesterol rechecked.
If the Cholesterol is within good range , you could choose to stick to the diet and exercise , or even choose to add in plant sterols supplements , but get it tested again at six months , and then every year , to see if things have changed and you require a Statin in the future.
If you find your cholesterol is not helped by diet changes and it is still in higher ranges after six months , it indicates you may have Hypercholesterolemia ( it's common) or require some Statin support to maintain low cholesterol levels and reduce the risk of future arterial plaque associated health conditions.
It's worth trying one at the lowest dose first for three months then getting your cholesterol checked and making a decision about using it long term from there.
If you choose to try a Statin I suggest to everyone that you request Rosuvastatin rather than Atorvastatin which is usually the type that is offered first. Rosuvastatin is tolerated long term by more people without side effects in reports from patients and members of various forums on HU . Atorvastatin is the Statin which causes the most early side effects and in higher doses is more commonly associated with muscle pain.
If you take statins or PPIs and steroids , long term you can benefit from eating more Vitamin B 12 and Folate foods , or taking a spray based B vitamin supplement. This is because the medication changes your stomach acid and overtime that can mean you don't absorb B vitamins as well from your food , as well those levels decrease it can cause more muscle or joints pain and nerve pain ( but that is because statins or PPIs contribute to the change in your nutrient levels alongside your other medical causes rather than Statins being the cause of many side effects alone ).
Basically, knowledge is power and it's good to know your needs with tests and to base your choices on your individual health issues and trial and error. Take care , Bee
Good morning, I was diagnosed with PMR in March 2023 after paying to see a consultant! I was on put on 15mg and over time have lowered it to 2mg. I refused Statins as one of the side affects is more pain in your joints! I do take a 3in1 magnesium tablet which helps with restless legs and if I am having a stiff and painful day I do take iberprufen
I asked the Dr to say why I needed Statins and some of the points added are nothing to do with my chlorestoral readings.
I will now be starting on Physio exercises; privately acquired to build flexibility and gentle swimming twice a week.
All the very best with your slow reduction of steroids
I posted here a few weeks ago after being prescribed Atorvastatin. They caused a bad flare which took me back almost to the beginning of my PMR journey ( that started three years ago.) I've still got a lot of shoulder and hip stiffness and will not be risking statins again. (I'm taking plant sterols) But some people can take them without any problems. I suppose you can only try them and see, but do try to discuss the pros and cons with your GP first.Through my own research I found that taking them with Amlopidine (for high blood pressure) exacerbates the effect on muscles. My Dr doesn't seem to know that!
do some research on statins... if you have clogged arteries, low dose statins can help with heart inflammation and help to keep the plaque from causing problems..
But how do you know if you have clogged arteries? I don't think there is anything that can stop bits of plaque breaking off and causing problems, once it's there it's there. I'm trying to do my research, but there is so much conflicting information out there and what is believed to be right at one time is often disproved years later in the light of more knowledge becoing availalbe. Epidemologically speaking if you had millions of People on statins, some of those people will not have a heart attack as a result but we know very little about how statins would affect a particular individual, we're just guessing at the moment. If I'm wrong and talking BS I'm open to being corrected as I'm no medic or scientist
One of the effects of statins is to stablise the plaque and they also regress over time which is why it is important to take them consistently. Using them early has an effect on the development of plaques so reducing future risk.
😀😀😀 I vaguely remember us debating this topic a few years ago and if I rememberright you and I were both fairly anti statins so I'll be very interested to read about what's changed your opinion. And I'm also glad to know you'll call me out if/when I ever talk codswallop
New studies that were more reliable or applicable - I will always rethink when presented with evidence. I'm still not entirely pro-statins, I won't/can't take them so I am on the other stuff. Whether that has the same overall offect as statins I don't know. But no-one nags me ...
you can be tested.. a cac test can tell how much blockage. there is soft plaque and hard plaque. statins can help, but the dosage may not need to be so great as cause other problems... also, check out nattokinase.
FYI; One of the most common side effects of taking Statins is muscular aching identical to the muscular aches and loss of functions you are experiencing from PMR.
I am not a doctor, but am suspect of any MD who would recommend any type of statin for a PMR patient.
Doctors are paid by the Pharmaceutical industry to prescribe statins. At least get a second opinion before taking totally unnecessary drugs.
"Doctors are paid by the Pharmaceutical industry to prescribe statins"
Not in the UK they aren't. In the UK they MAY be remunerated by the NHS for completing certain tick boxes to ensure best practice for certain patients but it has nothing to do with Big Pharma.
Yes but this is a multinational forum, and the charity is based in UK, which is why we always remind members that there are differences in medical care and the approach in various countries - so not to assume that what happens where you reside is the same for everyone.
As you said, “this is a multinational forum”. Not just UK.
My point is, and alway has been that, taking statins (in my case, Simvastatin), may cause the very thing you are fighting with PMR. And doctors, in particular US doctors, are in lockstep with the pharmaceutical industry in prescribing unnecessary and sometimes harmful drugs.
Lost all strength, Took to my bed for a few days (previously unheard of in 80 years). Then literally couldn’t move to get out of bed. Eventually able to roll off bed. Had to get Doc to visit me at home.
Same here. Father’s Day, 2020. Couldn’t even roll over in bed. The reason I link statins to PMR is because I took Simvastatin, and over a three year span, increased the amount because it was not lowering my cholesterol. Over that same three year span, I was diagnosed with rotator cuff problems and recommended for surgery. Then possible carpal tunnel surgery in both hands. Then possible hip replacements. I quit taking Simvastatin, cold turkey, (2018) and every one of those symptoms disappeared within 30 days. And no, I never had any of those recommended operations.
Then came Father’s Day 2020. Same exact symptoms, but all at once. You can draw your own conclusions from my experience. But, my best guess, is that a very high percentage of PMR patients are taking, or have previously taken, statins.
Very interesting. From being a very active person, golf four times a week at age 80 , I can no longer move either arm more than waist height unless i lift it with the other arm. I never considered statins might play a part ??
I was an active general contractor building homes. Great health and in shape. But. . . my doc insisted I take statins because my cholesterol level was at 240. The cholesterol level never dipped below 235. Turns out, high cholesterol runs in my family. Father. Mother. Both lived into their 90’s. Daughter (49yo), who competes in half-Ironman marathons, swims across the San Francisco Bay, and has about 2% body fat, also has a cholesterol reading of 230. I’m just turning 76 and ended my PMR experience by taking hydroxychloroquine for 2 years. (I took Prednisone for the first six months, then switched to Hydroxychloroquine).
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