I recently came across this article from 2020. There may well have been discussion about it on the list in 2020 which I may have missed.
Can I ask did any of you PMR sufferers decide to stop taking statins to see if it helped? And did it help?
Looking back I have had a chequered past with statins over 30 years.
I eventually got off them through diet. About the same time my PMR symptoms started I also developed Atrial Fibrillation again and my Cholesterol levels rose again considerably. So I was put on statins once again. Up until now I have never thought about statins possibly having a role in my current predicament. However I guess it might be a possibility.
I don't seem to be able to contain the pains and Stiffness no matter what dose of pred I take.
Have stayed on 10mg since Christmas but the pains are getting worse if anything. I tried slightly higher pred doses up to 20mg but they did not improve things so went back to 10mg.
My Rheumatologist has put me on Azathioprine since last week which I know will take time to work along with the 10mg of pred.
However at the moment my symptoms seem to worsen by the day. It is very hard to get out of bed and to walk.
So clutching at straws I wondered if stopping the statins might help.
Any advice would be gratefully recieved.
Written by
ValleysBoy
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I must first make it clear that although I'm an ex nurse, I'm not in any way qualified to reliably answer your questions from a medical or scientific point of view but others who can offer you more advice will be along shortly.
However, what I can tell you about, is my own experience of PMR and statins.
Like yourself, I've a long history of being on and off statins for various reasons, and at the time of my diagnosis, I'd actually been off them for approximately 3yrs. So in my case, the statins most likely weren't the trigger for my PMR.
Unfortunately, statins increase the chances of developing rising cholesterol levels and as mine had slowly been creeping up again anyway I found myself also being diagnosed with hypercholesterolemia! I'd no choice but to go back on them because as successful as exercise, diet and certain yogurts had been in maintaining a lower blood cholesterol level, it was not low enough to be considered safe.
As one would expect, as I've got older, it's become increasingly harder for my body/metabolism to control that level itself so help was required in the form of Atorvastatin.
I don't believe in my case, that the statins have been affected by my PMR or other meds, or have themselves affected the progress of my PMR or the effectiveness of the meds.
I know more knowledgeable people on here might suggest that if higher doses of pred aren't alleviating your pain then there's a good chance it's probably not PMR.
Each of us has a different 'health story' to tell and so many different things might or might not have been triggers for developing PMR. The truth is though, that for most of us, we'll probably never really know for sure.
I hope you get some answers though and are able to determine if the statins have or haven't played any kind of role in the development of your condition.
Many thanks for your reply. My story with statins is very similar to yours. And they probably have nothing to do with my PMR. Still I thought I would ask in case stopping them had helped anybody or lowered the level of their symptoms.Thanks again
I developed PMR long before I was offered (one word for it) statins. About the same point the PMR started, so did atrial fibrillation, although it wasn't recognised as such. When the a/f was identified a nurse appeared with a tablet and gave it me to take without any information (fairly normal in hospital here I fear) and when I did discover what it was I refused. They got quite stroppy and I agreed to try it despite the PMR and my knowledge of potantial muscle problems. Within about 10 days I could barely walk up even the slightest slope - I had left hospital better than I had been for a very long time in terms of PMR. I stopped the statin and it took a few months to get back to where I had been before. My usual cardiologist was fine about it but recently a different cardiologist got stroppy again and I agree to try just to keep her quiet. The first2 weeks were fine but in the 3rd week I started to develop a flare. Maybe it was coincidence but it got worse and the myofascial pain syndrome bit really took off - my rheumy started a therapy but before it was done I ended up in the ED unable to move at all. That flare went on until I was started on Actemra/tocilizumab and since then it has slowly resolved.
Was it really the statins? Well, I improved when I stopped them. My cholesterol is probably even higher now I am on Actemra - I'll have the same fight again.
However - if 20mg isn't sorting the PMR symptoms there is a fairish chance it may not be PMR or not only PMR, Someone needs to get their brain in gear and investigate that.
Slight reversal in topic but before prednisolone my cholesterol count was at 4, now 7. Can prednisolone impact on cholesterol count or is it those ice creams by the river which help the stress? Anyway statins now 'offered'. Is this lose lose?
Yes that is what I thought. Shall dig out leaflet, highlight relevant bit and present at surgery must be on road to recovery, wouldn't have had energy a while ago. Thank you
In my leaflet for Genethics 5mg Pred, section 4 under possible General effects it says , increased cholesterol or fat levels in blood, .... etc etc a long list of possible side effects. It's also mentioned in the PIL for Wockhardt brand
Mine are Prednisolone 1mgs by Strides Pharma. Still can't find definitive ref so wondering if you have prednisone? Still thinking about it, will probably wait until face to face with evil statin and cut it in half! 😀
I have Prednislone as am in the UK. I can't find a Strides pharma PIL online but you must have a leaflet with the package? Usually section 4. As Pred is pretty generic, if it's listed as a side effect in some brands it's probably common to all
So far can't find any reference to statins per se. But various sites of Google do mention that pred can help raise cholesterol and I was sure I had read it somewhere. Can understand the cycnicism . Be good to pin a GP down until all questions answered.......😀 Read again and still cannot find any mention, when questioned the GP said definitively that there was no impact on cholesterol from pred. I'm going with the cynical side and will ask more questions......
Not sure what you're asking here, we may have got our wires crossed. You asked if Prednisolone raises cholesterol and that is the question I was answering; it seems yes it can according to the Product Info Leaflets. Whether statins can reduce cholesterol is another question and so is whether there is any link between cholesterol and heart disease and also whether statins can 'cause' PMR or exaccerbate it eg leg pain. Anecdotally I have come across people with PMR whose leg pains went away when they they stopped the statins, but I'm not offering that as proof of any connection, just a possibility given that advice to GPs is that there can be an interaction. I don't know how GPs figure out all the complex possibilities. For example is something like 'dizzyness' or 'brain fog', which I suffer with, down to the disease or a side effect of one or more meds? Good luck with your decision. My starting questions when a new med is suggested are:
Do I really need this?
What will happen if we do nothing ie I don't take it?
What would we expect it to do?
What are the possible side effects?
How will we know if it's working? How will it be reviewed?
Thank you. Original query was could pred increase cholesterol. It would seem so. There is no mention of this in my PIL, nor of elevated blood fats. The GP did mumble something about lipids but seemed to discount this. Perhaps a level of ignorance is bliss and do I have the energy to query it if not.....
Thank you PMR Pro. This list of side effects is the best I have seen and even better when you click each effect it opens a new window which goes into each side effect in great detail. Also says which side effects are reversible when pred is stopped.I can't thank you enough.
Thank you. Have now looked meanie statins in the face. Have decided to cut them in half. Also reducing from 4mgs after over a year to 3.5mgs DSNS. Text message from surgery saying not to call unless emergency as no staff. Don't know why they just don't close!!! DIY..... though haven't worked out how to distinguish cause of any aches, fingers crossed don't get any.
Part of the reason I'm cyncical about statins is because GPs get a financial bonus for putting people on them. But still worth discussing options with your GP. My dad was put on statins at the age of 86 and he thought they were causing side effects like swollen legs so I told him to query it with the GP as he has never had heart or cholesterol problems anyway, the GP said something vague like on balance they can help the general population, a kind of numbers game, so he stopped taking them. If he's got to 87 he must be generally on the right lines health-wise, in fact he's in much better shape than me
Hi tangocharlie, thanks for help and time much appreciated. Have replied to pro, don't know how to copy it to you bit it presently is 2 messages above this one. Hope you find it. Again thanks
Actually - just read this again - and it rang a bell:"
Adults age 75 and older may not need statins.
Their doctors usually prescribe statins to prevent heart disease. But for older people, there is no clear evidence that high cholesterol leads to heart disease or death."
"Do not start a statin in patients ages ≥ 75 years who do not have known vascular disease or type 2 diabetes; start or continue a statin in all patients ages 75 to 84 with type 2 diabetes to prevent cardiovascular events and mortality; and start or continue a statin in patients ages > 75 years who have known vascular occlusive disease"
No where can I find any reference to prednisolone having an impact on cholesterol. Brand of pred was changed when I moved area and changed GP so now am scrabbling through remaining chaos to see if I can find any original instructions. More and more I get the impression that health is heading towards the DIY banner!
It would probably be in the list of side effects, but it may not say cholesterol as such……it doesn’t mention diabetes necessarily but says - can raise blood sugars.Does it say something like elevated blood fats , which I think implies it can lead to higher cholesterol levels ..
Am going with with Pro's link. It says nothing in my PIL. GP did mumble something about lipids but discounted this. Also read that statins are of limited value to a female who has not experienced heart problems - but that is for another day! Thank you all for input - guess it is a case of suck it and see!
Yes that’s true - but if you try them-at least you can say you’ve given them a go. If they don’t suit you then say so, and then refuse them. They do bang on about them -it’s very wearing at times!
Have speed read instructions and can't seem to find reference. It might be listed by name given a d not just plain old statin.leaflet is for prednisolone🤓
Is what a low dose? Do you mean is 7 low for cholesterol? If so, then no it’s not, it’s considered to be above a heathy level - which is 5….but that’s only a guide and NHS say you should discuss with doctor.
But if it’s steroid induced it will probably fall anyway…and if you haven’t been contacted by surgery then it sounds as they aren’t concerned.
Yes been contacted by surgery. Resulted in telephone appointment with never heard of before doctor.when asked if long term pred could drive up cholesterol level there was a lot of paper shuffling before he said no. I remained unconvinced. Has issued 'low' dose of statins after asking me which ones I would Prefer! Bit of a loss here!
I have been ‘persuaded” to try statins again - was on them long time before GCA/Pred etc - took me three different ones then to get one suitable- Rosuvastatin.
When I came off Pred, GP stopped them, couple of years later levels has risen, so put back on Rosuvastatin- didn’t agree so came off again.
Last annual check up, risen again, so suggested I try new one - Pravastatin 20mg .. said I would try, but have only been taking 1/2 tablet per day to mitigate side effects, which it seems to have done. Whether it’s enough to lower levels remains to be seen, due to be retested shortly so if okay will stick to that. Will let you know.
Pravastatin was I am told the original statin and the one that has the least side effects. It is not as potent as the newer drugs like Atorvastatin apparently so often need a bigger dose to be as affective.
Lovastatin was the first approved in the USA - in 1987. Pravastatin was not approved until 1989 and while it has been found to cause fewer side effects it i also weaker.
So what did you do with cholesterol? Tried diet (apart from competely essential ice cream 1 x week). Not at a happy with consultation, knew more than he did but telephone time obviously rationed...
I accept the level - there are studies that suggest that there is no protective effect from statins in women who have not already had a cardiovascular event (MI or stroke for example). The situation is different once you have had one or for males. The other cardiologist also ascribes to that opinion - though maybe not as emphatically as Aseem Malhotra! I have had a carotid scan - the doctor (the one so keen on statins) is quite rude when scanning, never speaks to her patient although she carries on a lively conversation with the nurse, and only said "That is fine" which I take to mean there is no athersclerosis there. Diet rarely makes a difference since most cholesterol in the body is produced by the liver and at a guess the medications that raise cholesterol do so by their action in the liver.
Frankly, the way I felt on statins I had no desire to live longer! It was awful!!!!
Am on a steep learning curve here! Liver now - blood test results flagged up cholesterol and slight dip in kidney function - remedy drink more water. Liver all fine but serum alanine aminotransferase 8iu/L below reference level. What does this mean? No one is even commenting at health centre!!! 🙃
"Having a lower than normal ALT result is uncommon and usually isn't a cause for concern. However, a lower than normal ALT level could indicate a vitamin B6 deficiency or chronic kidney disease"
It is often raised in PMR/GCA (though lots of doctors don't know that). Could well be related to the creatinine/renal function. Will be checked to see if there is a trend.
What is the ALT normal range quoted on your results? In most of the online refs I can find 8 is within range - not even particularly low in the range in some.
Many thanks PMRpro. I am, as always, grateful for your observations. As I have had the PMR for 3 years now and have been back on the statins for most of that time it probably is unlikely that the statins are to blame in anyway for my ongoing symptoms.I don't think, however that it will do a great deal of harm if I stop them for a couple of months to see if things improve, as they did in your case.
I agree that if it is not PMR it might be something else but having just seen my Rheumatologist last week and wrote out for her in detail the daily pain and stiffness areas I suffer with each day and explaining that these seemed to be getting worse not better her response was to try me on Azathioprine. This has some quite nasty possible side effects but I really need to do something. Before this she tried me on sulfasalazine but this was stopped after I ended up in hospital with an infection. She has ruled out methotrexate as I already have some scarring on my lungs and that can make that a lot worse apparently.
To be fair she is a really nice chatty fairly young Rheumatologist who has done lots of blood tests at each meeting. She does listen to me and has agreed I stay at 10mg of pred whilst we see if the new drug works long term.
Beyond blood tests and a dexa Scan she has not suggested any other tests to identify what else it might be if not PMR. Perhaps there might not be any?
I saw your suggestion to possibly go to a private Rheumatologist, Dr Hughes, and I rang there today. The lady said there would be an initial £220 consultation fee plus £120 for further sessions. I asked what kind of tests etc would be included in those fees and she said none but any needed might ne able to take place on the NHS.
I live in Wales and the consultancy is in Surrey so it will be quite a journey each time probably with an overnight stay.
I am pretty desperate to get some relief but am not sure if the result of consultations would justify the expense. I would hate to spend all that money to end up where I am now.
Still I will have to weigh that up for myself I guess.
North or south? I think one of the doctors at Oswestry does private work - I know Wales is a bit of a desert. Do the painful areas move around or are they fairly consistent?
South Wales near Porthcawl. The shoulder and hip pains are in pretty much the same place all the time but other aches and pains in my feet, outside of my calfs, outside of my arms, hands, especially my right one which swells up from time to time, these are not constant but do move around. Lately however all these areas seem to be getting worse daily.
Symptoms of that sort that move around, from one joint to another and lasting hours or days in each place, is typical of something called palindromic rheumatism which eventually can turn into RA or another inflammatory arthritis. And you can have both that and PMR.
Thanks PMR Pro. I agree it would make sense but I don't think these pains are in my joints at all. To me the pain seems to be in my actual bones. Outside of the leg and arm or the muscles attached to them. I don't know if this is possible but that's how it appears to me. My Mum had RA all her life from age 12 until 92. My sisters children have had RA also from a young age. Also Lupus. So there may well be this kind of problem in our genes. However I thought I had been lucky in swerving these things until I got to 68. However blood tests apparently rule out RA. So I am flummoxed as to what to make of everything.
Both agreed because of the blood tests. Having said that my daughter, who is a GP, has autoimmune problems, not PMR) and she has been told similar things by her consultants but she says the same as you. There are sero-negative arthritides.Again I am not sure I how I can move forward with this. I took my daughter with me to previous Rheumatology consultation and they both spoke a lot of things I didn't understand. As a result I was put on the Sulfasalazine. But as I say that was stopped after I ended up in hospital.
No sadly because of her immune system problems she has to do mainly phone consultations and she teaches at meducal school at a University.Obviously I don't really like involving her in my medical problems. But my thoughts are if between her, (who I know has my best interests at heart), and the Rheumatologist they cannot seem get a grip on what is going on with me, like you suggested somone needs to get their brain around this, then I really don't know what to do. I am happy to spend the money on a private Rheumatologist if I could move forward in understanding and coping withand treating the symptoms. But if my daughter cannot get a grip on things, she trained with the Rheumatologist, then I am not sure anyone will be able to.
I follow you and the list each day hoping that something will ring a bell and take me forward.
It highlights the fact that there is a real unmet need for a way of diagnosing both PMR and GCA rather better. That is what is needed above all - more than better drugs in my opinion.
Having been diagnosed originally with arthritis in the spine ( the one place that wasn't hurting! ) a casual mention of very unusual weight loss ( just a couple of my for ever 120lbs ) led to blood tests and a call to say, " we know what's wrong with you". I didn't know enough to ask any questions . 30mgs. of pred. gave complete relief in four hours. Why was the weight loss so definitive?
In eight years of PMR there was never any sign of GCA but when PMR came back for the second time my GP did say that, " We will treat it less aggressively this time" and started me on 20. I didn't ask why which surprises me now. I suppose I just felt that I could trust him.
I have said elsewhere that my second bout took two years longer to resolve than the first but whether the difference in starting dose had anything to do with it, who knows?
Quite - but I don't think that this fad of starting at low doses and rushing the patient off pred does most people any favours. If using the massively high doses pulse therapy (1000mg per day for 3 days) in GCA actually results in the cumulative dose being lower - maybe the same would apply in PMR. And GCA patients mostly get off pred more easily than many PMR patients.
Without going into a lot of detail, I got switched to Rosuvastatin 20 mg once per day. About 6 mos after PMR diagnosis. My cholesterol is still in control. No side effects. Discuss with your Doctor and see if an option.
THIS IS NOT ADVICE I have a friend that is a pharmacist and I now only take 2 statins a week which he said Will work as well as 7 a week I’m going for bloods next week I’ll let you know.! I sometimes think the big pharmaceutical need to earn a living 🤣 I always check out how much of a drug is really necessary. I have been on s blood thinner for 5 years turns out I only need to be on 3 months. Only just finding these things out. THIS IS NOT ADVICE.
Very much depends WHY you are on a blood thinner. I am on one for life to protect me from atrial fibrillation disturbing clots that settle in the base of the heart and sending them off into the circulation where they could cause trouble.
Thank you for your reply. Please do let me know how your blood results work out as that might be an option for me if pain decreases after I stop the statins.
My husband doesn't suffer with PMR. I do but we had to move house because he was losing mobility. We uprooted from our lovely home in the Dales into a bungalow 60 miles away to be nearer one of our daughters. Our new doctor took my husband off Simvostatin.He is 85 and fitter than he's been in years, I am terrified of statins and won't take them after seejng the muscle waste he suffered.
I'm sure there must be a link or at least overlapping symptoms because GPs are advised to rule out statins being a cause or hindrance when diagnosing PMR, see this on drug-induced myalgia: patient.info/doctor/polymya...
. Also if people complain about muscle pains on statins for them to try a different brand:
I personally woudn't touch statins with the proverbial barge-pole with what I've read from leading heart surgeons saying they're a waste of time etc, but that's my personal decision based on my own circumstances.
Everyone is different. But statins and I simply did not get along. At first they caused me considerable muscle pain. Eventually I turned yellow and had to be hospitalized as they had affected my liver. I simply cannot take statins. I have high cholesterol and have had it since I was 40 years old. All my tests come back no plaque in my arteries. It’s familial. I don’t think everyone needs them.. if they cause you pain I would reconsider.
Five years prior to getting PMR, I was taking Simvastatin over a three year period. The first year was fine. Then, I developed right shoulder pain which the doctors diagnosed as rotator cuff damage. They suggested surgery. Then, the left rotator cuff started acting up and the right rotator settled down. Over the space of the next year, I began getting hip and knee pains, to the point that I had to get on all fours and have help getting up off the floor. Then. . . I developed carpal tunnel problems and lost the use of my fingers (either painful or stiff).
After three years of progressively getting worse, and many suggestive surgeries (which I turned down), I was started researching statins and reading forums. Another guy described exactly the same symptoms as I had been experiencing. So. . . .against my doctors advice, I quit Simvastatin cold turkey. And surprise of surprises, all of the pains, aches, and stiffness disappeared (within 30 days). I didn’t have to quit working. I didn’t have rotator cup surgery. Nor carpal tunnel surgery. No hip surgery.
I should also add; My cholesterol numbers never lowered more than 5 points over that three year period of taking Simvastatin. 240 to 235.
Five years later, I woke up on Father’s Day 2020 with every single pain, stiffness, and ache I had experienced when taking Simvastatin. All at once. I couldn’t even roll over in bed. The rest is history. It took a month to diagnose PMR and another to get it under control. But I personally believe, regardless of what doctors or the Pharmaceutical experts say, that Simvastatin was the sole contributing factor in my eventually getting PMR. I would never recommend anyone taking statins. Ever.
That is a extremely broad statement as everyone responds to each medication differently.
Just curious, did you happen to do a drug interaction check between the statin you were taking and Prednisone?
If not, may be worth checking. Also, taking a statin lowered my cholesterol from >270 to 200-220 range. I’d say that indicates it was effective for at least one person. Doesn’t mean I’d recommend everyone taking them, but that some people tolerate them fine without their muscles wasting away or having any other significant side effect.
My wife has a low tolerance / rather high sensitivity to medication or dosage, so her doctors have to be extra cautious. I, on the other hand, have very low sensitivity. In fact I’m not allergic to any medicine taken to date and have been switched due to low level of effectiveness or documented interaction with another drug.
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