Hi, I’m Joe. Age 71. I have had PMR since June 2021. I am almost convinced that my PMR was brought on by my previous use of Simvistatin. I had these same PMR aches and stiffness when taking Simvistatin, and they went away almost immediately when ceasing use of any statin drugs.
Has anyone else connected Statins with PMR. Studies in 2014 imply that they are connected.
I had leg pains on Statins and when I stopped taking them the pains whent away. I think that my PMR started after my first flue shot but there is no proof. There is however a research project that has said that it could have been possible. But it's a very common ward 'could'.
I'd never ever had a flu jab before I got PMR ever ..I believe you have a few mild symptoms most of your life (I'd always suffered with an aching neck) but only brought on properly and severely by excessive stress
I am sure this has been a topic on here before.
I would be interested in reading anything that associates Statins with PMR.
PMRPro is your person, she remembers everything, me, not so much. It was exactly as you say though, links had been drawn between being on statins and developing PMR type symptoms.
Thanks for your reply. After what I experienced with Simvistatin, I warn as many as I can about the dangers vs. the so-called benefit of statin Cholesterol medications. Then, five years later PMR hit. 🤨
Hosers2 - I recently stopped taking statins and amazingly all my PMR symptoms disappeared too. I feel so much better without them .
Hi there.I've taken statins for approximately 10yrs and heard of absolutely no 'significant' link between them and PMR....and I have done a lot of research on statins over that time. However, they are well known for causing the very common side effect of varying degrees of muscle pain......a kind of myopathy caused by slightly raised levels of creatine kinase. If these levels are raised further then this becomes myosis ........and excessively high levels can lead to a much more serious condition of muscle wastage called rhabdomyolosis. This one is rare though. Achey legs are extremely common when taking statins and some statins seem to be worse than others for doing this....Simvastatin is repeatedly documented as one of the main perpetrators.
As you've done a lot of research on statins - can I ask your advice??
I really don't know what to do! I was in hospital last week and they insisted I take statins (cholesterol 390). I used to take it a few years ago but stopped because I had no "heart issues" and couldn't see the point.
They said "Atorvastatin" but I have read that is one of the worst ones. It also says somewhere it's too strong for those over 75!! Don't know what to do. If I go to the doctor she would probably say "take it". As I have aggressive PMR (even after 9 years) I'm stuck!
Hope you don't mind me asking you personally. 💐
What is your LDL level?
The discussion is complex - but if you scroll to the pretty picture at the bottom of the article it comes down to: do the adverse effects outweigh the putative benefit?
acc.org/latest-in-cardiolog....
Did you have any side effects last time? That is a basic question. You seem to be doing OK without at present ...
Ooooer! I didn't dare ask you as I had asked the same question about 3 years ago!!😂
I can't remember if I had any side effects (so they couldn't have been bad, could they)?
The LDL is good. I AM doing well and I don't want to rock the boat (that's why I asked again).
Thanks for answering. 👵🏻
I don't have to have the argument - statins are banned on my notes. But like you - I don't want to rock the boat ...
Always getting the two levels mixed up. It's the bad level that is 390!
What on earth is the total cholesterol then?
Heaven knows! I'll have to sort out the hospital report. Knowing me that is the total amount! I'm getting 'really old' now (or more and more stupid)!🤪 I used to blame it on 'brain fog'.😂😂
Hi Constance13.Obviously I don't know your full medical history so all I can do is tell you of my own experience.
I've been on statins for quite a few years now, and took a break myself when a new doctor assessed my risk of having a heart attack or stroke over the next 5-10yrs and it showed my risk was very low. For two years I attempted to control my cholesterol level myself.....as I'd managed to do in the early days.... but when I was re-tested my cholesterol level was dangerously high and I was diagnosed with familial hypercholesterolemia. I now had no option really. It was excessively high. I've been on Lipitor (Atorvastatin) ever since and although I've had a few issues with aching legs (particularly in an evening) I've found ways to manage those issues.
I have to be honest and say I've not read anything about it not being suitable for over 75's, although I may just have missed that info.
If your LDL cholesterol is low and HDL cholesterol high then I would argue the case to not take statins. If you don't need them, there's no point, and active PMR is not a reason to take them. You may not be able to rule them out in the future if things change, but unless they're actually going to serve a purpose, I'd avoid them if at all possible. I don't agree with them being doled out as a preventative measure, particularly if they're going to cause other health issues.
Hope this is helpful.....and of course I don't mind you asking me personally. We're all here to help each other in any way we can.
They are almost never tested in older patients and the whole thing is discussed in the link I gave Constance. If they do lead to some of the side effects it becomes more significant in the older patient because of mobility issues.
Interesting, do you have any links to those studies. I’ve been on statins ages & no different with pmr
No, I would have PMR many years beforehand as I was put onto statins for very high familial cholesterol which lead to my mothers stroke & my aunt to be on ‘stroke medication’. We all tried diet & it didn’t help the high cholesterol at all. I have had no side effects from Atorvastatin at all. But perhaps it could be in your case? We are all different, & there are differing statins, too!
I’m taking Lipitor and my doctor reduced me to 1 tablet twice a week.
I stopped taking them daily a long time ago due to leg pains. It was so bad I couldn’t walk ...so I stopped taking them when PMR started 2 years ago.
Recent visit to my GP a few days ago, she pleaded with me to try taking them ( Lipitor) again but to cut down to twice a week.
YuliK 😷
I’m surprised she didn’t try you with a different statin as that one gave you such bad side effects. I’ve had bad side effects to quite a few drugs, but changed to an alternative & found it fine. Just a thought. Or perhaps try a lower dose but daily. I’m not a doctor, but just trying to help,..good luck!
Hi Jo I tried simvastatin tabs for a couple of weeks around 6 yrs ago but refused to take them as they made my legs ache,I have just been diagnosed with PMR a couple of weeks ago but certainly can’t attribute my condition to statins,l also have never had a flu jab so can’t blame that either.
Try this previous discussion healthunlocked.com/pmrgcauk...
Hi Hosers2. I was put on Simvistatin for raised cholesterol and had a gradual increase in leg stiffness and pain until I could hardly walk. I saw my GP and he stopped my statin straight away. He said I had PMR and started me on Prednisone (30mg). This was 5 years ago and still only down to 4mg. My sister had a similar experience on Simvistatin but had the sense to stop taking it as soon as the pains started whereas I carried on for several years.Read into this what you will.
When you were diagnosed, did they do the typical tests for inflammation?
Yes they sent me for lots of tests.
I was started on Simvastatin around 12 years ago and experienced vomiting, diarrhoea and dizziness. I stopped taking them then started again, just in case the stomach issues were related to something else, but the same thing happened. They switched me a couple of times to different statins I can't recall the names of, but one was Atorvastatin with the same side effects. About a year later they gave me Rosuvastatin, but only a low dose 5mgs which I can tolerate. Maybe it was the high dose I couldn't tolerate. No leg pains like other folk, but I am a bit of an oddity. And now here I am with PMR and GCA on top of insulin dependent diabetes. Age or medication related? Who knows?
I have been on statins for many years and the first three I tried gave me more aggro than my OA, went onto Rosuvastatin and had no problems. Think we other posts running concurrently about this theme.
Nothing to add except a certain heart specialist takes everyone off Simvastatin when anyone he is seeing is on it.
and:
My Cousin who was around 85 at the time had a TIA (Transient Ischemic Attack - small stroke) her levels were high.
The stroke clinic recommended a bowl of porridge followed by a real orange (not juice) at breakfast everyday. Within 3 months cholesterol levels normal and they continue to stay there and she is now 92 and she still has porridge and an orange everyday for breakfast.
This sounds interesting, I take organic Apple cider vinegar every morning to help my high cholesterol 1 tablespoon in half pint water.
I took statins and within 6 weeks every muscle in my body hurt I couldn’t even open i door as I had no grip,
I also had extra muscle pain all over my body on steroids, (not as bad as on statins ) so after 2 years I managed to stop in November 2020.
All was not bad until 2 weeks ago and the shoulder and hip pain started again and I couldn’t work stuck in bed.
I have gone back on 20mg s but it made my blood sugar so high after 2 days I dropped to 15mg and feel loads better, only have stiffness in hips and shoulder no horrific pain.
However I have had a couple of accidents which have traumatised my body and think this may have been the start of my PMR
Maybe, but this link doesn’t say it’s proven - data is pre 2012- europepmc.org/backend/ptpmc...
Thanks. I had read that article. I wonder why other studies have no been taken, considering statins are the go to drug to cure our latest (sometimes imagined) public problems. I suspect, based on how much pressure doctors put on patients to take these drugs, that $$$$$ is involved, with pharmaceuticals making some big bucks. To be fair though, I am also skeptical about the annual flu shots every doctor, pharmacist, health department, is pushing.
It's not just big Pharma; GPs get a bounty for putting you on statins.
PMR is listed on the data sheet as a potential adverse effect of Simvastatin - even the manufacturers admit it. There are a few statins tarred with the same brush and some are more likely to be associated with PMR than others but muscle pain is a common effect (whatever the manufacturers and statin supports whould have you believe). Simvastatin and atorvastatin (Lipitor) are said to be amongst the worst and that was established in a study but I can't find that reference.
I was given another statin (Lipitor, atorvastatin) and after just over a week at half dose I could barely walk. This was long after PMR had been diagnosed and I'd started pred and the effect was a bit different. It took months to get back to the state I had been the week before - and statins are now listed under the DO NOT GIVE list on my medical notes.
If you want to find studies and article use your search engine to look for "are statins associated with polymyalgia rheumatica". Most of the results are case reports but one clearly associates PMR/GCA with use of atorvastatin:
rheumatologynetwork.com/vie...
They had also reported the association after identifying a link in an adverse event reporting database. Something that underlines the importance of the Yellow Card system in the UK and the FDA system in the USA.
Increasingly such reports/articles are hidden behind pay walls - very annoying!
Of course, like every other putative trigger for PMR, each patient is different and many may be fine, or fine on one particular brand. I'm not prepared to pay myselft for a pack of each to try out - only the cost of one particular statin is reimbursed here, the rest you pay yourself. Might take a long time too given how long it took for me to recover last time!
Statins are one tablet l will not take ~ if after l get my scan results they consider it essential l shall revisit it, MrT is on Atorvastatin & l watch him like a hawk but l could not take anything that would make my leg pain any worse & l do know someone who’s PMR was attributed to Simvastatin.....
I must get a Cholesterol Level at my next Routine Bloods to see how it comes to last year (5•05 from memory)
I had always refused but they smuggled them into the pill list while I was in hospital after the atrial fibrillation. They genuinely weren't going to tell me or discuss it! I reluctantly agreed to try them - it was awful. So I stopped it - unilateral decision and then discussed it with the pain clinic doctor and the cardiologist who both agreed it was best. Mine is raised but my HDL is very high too. I was to try reducing it with diet - no dairy they said. That'll be right!!! It was quite funny when she realised I now had next to no calcium in my diet. She wanted me to give up my cups of tea - I think not!!!!
PMRpro How long to you try the Statins for?...
About 10 days at half dose - I was almost in a wheelchair by then, no way I was risking longer!
My GP rang me on Monday, “l see you’ve never requested the Simvastatin from your repeat?” Oooppps! Rumbled!....
I explained my concerns & he agreed about Simvastatin but would l try Atorvastatin? It should be 80mg because of my Angina but thought maybe the Prophylactic dose at 20mg? As any help would be better than no intervention.......
I reluctantly accepted his suggestion & the tablets have arrived from the nice man at the Pharmacy.....
Now What? I think l should be chasing the Heart CT Scan Results - who knows when l’ll get an appointment, even over the phone, so l’m presuming it’s not life threatening!......
Um - atorvastatin is the other one with a bad reputation for PMR. Just saying ...
😳🤪 l’ve been reading the PIL 😩
How high are your cholesterol readings Angela?
Results as below Constance x
This is interesting and actually very appropriate right now for me, as today my cholesterol result came back at 8.4, following a fasting blood test. The doctor rang me today and basically isn't sure whether to put me on statins or not, as she knows my steroid history and did suggest leaving off until I'm off pred. I did say well that could well be the summer or longer. She's going to seek some specialist advice and get back to me. After reading everyone's messages here I'm not relishing the thought of taking them. Help!!
It was lipitor (atorvastatin) that did for me, PMRP
Hello PMRpro: I was interested in what you had to say on this topic of statins, mostly because you (and others) helped me so much when I was getting over PMR and I very much appreciate your research and how you share that for our benefit. Thanks again!
I had "straight" PMR for about 2 years from age 52 - 53. Although my physicians told me I no longer had PMR, it took me another 3+ years to truly rid myself of all the side effects and feel like I was returning to normal, albeit somewhat older. So, when my physician prescribed 20mg of daily rosuvastatin a few months ago, I was concerned about the "sore muscle" potential side effects. My cholesterol levels have never been particularly high, but my father, his two brothers and my Aunt died in their early 60s of congestive heart failure, despite being very fit and otherwise healthy. Due to my family history and now at age 58, I decided to proceed with the rosuvastatin and to date I consider myself lucky to have no noticeable side effects and no return of sore muscles. My LDL levels have dropped to 71.
A cardiologist here in Denver CO who specializes in cholesterol research, insists that LDL should drop to the 30s to truly benefit those with a family history like my own and can actually reverse atherosclerosis. He has prescribed my brother the Repatha shots every 3 weeks...very expensive but apparently effective for those who can not tolerate statins or would benefit from an alternative or more effective treatment.
As an aside, my neighbor was not so lucky as I and no matter which statin his doctor prescribed, his muscles were so sore that he could not walk. (He's never had PMR.) His wife is a pharmacist and she told me that based on her research, statins may interfere with the production of CoQ10 in some people. I thought that might be of interest in regards to your research. Wishing you all good health from Colorado!
Thanks everyone for your responses (and links). My background:My mom had high cholesterol >280. Lived to age 91.
My dad had high cholesterol >240? Lived to age 95.
My daughter (age 42) is a tri-athlete and even does half Iron man competing. She has about 3% body fat. And a cholesterol level of 230.
My level is 242, always has been even when taking Simvistatin for three years.
I had doctors tell me I needed rotator cuff surgery. First my right shoulder, then my left. But the pain kept transferring from one shoulder to the other. Then my hips. Then it was suggested that I needed carpal tunnel surgery when my wrists and hands went numb and I could not hold onto my tools.
I read a blog 2015 about another guy having the same symptoms. He quit statins and said he recovered within a month. So I quit, cold turkey. In a month 95% of my pain and stiffness was gone.
June 2020, PMR hit me overnight. With the same exact pains I had experienced taking Simvistatin.
Yet. . . .still my Internal Medicine doc thinks I should be taking Cholesterol medication. I refuse to, and warn anyone and everyone I know about the dangers of statins, Simvistatin in particular.
Thanks again for your replies.
My GP tried to put me on statins while I had PMR. I said what side effects might there be and he said possibly aches and pains. I said I've got enough aches and pains already, thank you, so he didn't pursue it!
One day I was in the waiting room at my endocrinologist's office when I started talking with a gentleman who was also waiting there. Turns out he was a cardiologist. He had been taking a statin for a couple of years and his health had seriously deteriorated. He stopped taking the statin and recovered, but he felt that he could no longer prescribe statins to hispatients. He realized that he couldn't be a cardiologist if he refused to prescribe statins, as that was what his patients and colleagues expected, so he was switching to endocrinology.
He had come to shadow my endocrinologist for a day . He recommended the following
book to me: How Statin Drugs Really Lower Cholesterol: And Kill You One Cell at a Time
by James B. and Hannah Yoseph.
There are cardiologists in Europe who take a stand against the received wisdom about statins.
I know two in the UK one a Professor works in a hospital near me. Someone you know was a patient of his and he stopped them the minute he looked at her papers. Then she tried the porridge and orange and it worked for her. Do not ever ask me how it works, as you know I don't have a clue and the stroke clinic did not really know either all they knew was it worked for some people.
I am with you 100% Joe. My PMR arrived within 6 months of starting statins.I also had other side effects that stopped when I ditched statins, most notably, severe cramps in the oddest places. My PMR cure is down to steroids so I've no way of ascribing it solely to stopping statins but the cramps - totally down to statins.
All the best
David
"European scientist" article by Aseem Malhotra 3/9/19"Do statins really work"
That man is my cardiology hero!!
Here is a link to the article and it is well worth a read and some thought:
europeanscientist.com/en/fe...
Now I understand why I didn't have a fight with my cardiologist - I DID know that they don't benefit women who haven't yet had a cardiac event (I hadn't) and shouldn't be given to older patients (not quite there but nearly) and that very low cholesterol is associated with reduced lifespan.
How much heart trouble results from the patient being scared by their doctors?
As with many medications, some swear by statins and some swear at statins! I have a family history that is not encouraging. Diet wasn't effective at reducing cholesterol but for me Simvastatin has been a godsend. I've been taking it for 8 or 9 years with no issues.
I’m glad it works for you. In the three years I took Simvistatin, my cholesterol didn’t drop more than 12 points. 242 to230. The minute I quit, it was right back to 240. It has remained there for the past five years. Nor has it changed after PMR hit last June.
You and I would be a classic example that one drug doesn't help everyone! I was consistently in the 220 to 240 range too. My readings over the years since going on simvastatin have been in the 90 to 120. Crazy huh?
I've been offered statins, but had learned about their side effects from a diabetes forum (before developing Palindromic Rheumatism) so refused them.
There has been a lot of discussion on this before, I think. I certainly think that statins played a part in my developing PMR and temporal arteritis. I never felt well on statins and often felt achey and dizzy. When my doc changed me from 5mg to 10, the trouble really started. A few weeks later, I was diagnosed with PMR. The annoying part was that the statins didn’t really help my cholesterol either.
I've read there is increasing evidence of a link between statins and dementia. Seems like common sense since the brain is composed mostly of fats and water. Daily consumption of good fats like Omega 3, olive oil, ghee, and coconut oil is so important for brain health. Do statins block the utilization of the good fats? As already mentioned, they do block the pathway by which the body creates Coenzyme Q-10, required for energy production.
My old doc (who originally put me on Simvistatin) didn’t prescribe CoQ10.
I seriously doubt many do. It certainly wouldn't be in the UK or here in Italy.
Myalgia caused by statins is listed as one of the differential diagnoses for GPs to rule out. Anecdotally many people on Facebook groups think their PMR was brought on by statins but I haven't seen it official anywhere.
Hi hosers
Your story is very similar to mine, in that statins caused my muscle aches 4 years ago that dropped my cycling Av speed from 17 to 12 after just 3 doses.
Here's my Profile that explains it in more detail.
*****************************************************************
PROFILE
Looking for an answer for stiff muscles, especially of the vastus medialis, (I am a keen cyclist) which started during a short 12 week course of statins ending in April 17.
However, despite stopping all statins almost 4 years ago now, the aches have not gone away, but have progressed.
I am a Lifelong cyclist, competitive till 45, able to ride/race at 25 av
Then, of course, slightly slower each year
So, at Age 50 I rode at 23 av
Age 60 at 20 av
Age 67, Pre-statin I was able to ride with my group at 17 av.
However, After just 3 doses of simvastatin my av speed fell to 12 av.
Dr changed it to rosuvastatin, but the aches continued.
Should Dr not have stopped all statin treatment at that point?
As the aches continuing on the second statin would have meant I was statin intolerant.
Concerned about an impending CABG (genetic atherosclerosis) I continued them
(After the CABG I stopped all statins myself at the 12 week mark, in April 17)
I talked to a local chemist soon after I stopped, about the continuing muscle aches which started with the statins and he said he would have certainly advised I come off them, after the aches continued with the second statin.
So, why didn't my Dr stop them?
But, for whatever reason, the aches progress by the week and my cycling speed is now down to 10 av - the speed of a leisure cyclist.
Taking those statins was THE biggest mistake of my life.
********************************************************************
All the best Hosers in finding an answer to your PMR
Alps
Alpsholiday,When you took the Statins, did your doc (or pharmacist) tell you to take CoQ10 at the same time. Mine didn’t. Apparently , the statins eliminate your natural CoQ10 in the body,so you need to take supplements.
After I quit Simvistatin, I started taking CoQ10 each day. I believe that helped me recover from the great debilitations that Simvistatin caused. It took a full month, but things did get better. That was in 2015.
Fast forward to June, 2020. I woke up with all of the stiffness, pain, and lack of strength to even roll over in bed. It hit like a ton of bricks.
It took 8 weeks to get in and see a rheumatologist who diagnosed PMR.
Statins are, in my opinion, a useless, dangerous drug. They did not reduce my cholesterol level one bit. I will make it my life’s goal to warn as many people I can to the danger.
Thanks for your comments. Good luck with this. You should get in to see a rheumatologist as soon as possible. He/she may be able to help.
Thanks for helpful reply Joe
No I didn't take Co Q10 during the 12 week course of statins, but did so a year later, after reading about it on a forum.
I took 200mgs Ubiquinol for 8 weeks but it didn't help at all.
I've seen lots of rheumatologists and neurologists, both NHS and private and have had every test, but nothing found.
Sorry to hear your aches came back last year and they say you now have PMR.
What treatment, if any, are you taking for this?
All the best!
Alps
Alps,I started with 15mgs of Prednisone in August and reduced to 10mgs by October. Then reduced by 1mg each month after that.
I was down to 6mgs in January when I discovered I was having trouble seeing out of my right eye at night. And vertical lines were wavey. Turns out I have been developing Macular Degeneration and the ophthalmologist told me to get off of steroids as soon as possible. He suggested changing from Prednisone to Hydroxychloroquine!
My rheumatologist agreed, and prescribed HCQ with me gradually reducing the Prednisone by 1mg every five days. She says that the HCQ takes a couple of months to kick in fully. I am now down to 1mg Pred a day without any adverse effects so far. I plan on staying with the 1mg for another month.
Meanwhile, I have had two shots in my eye, hopefully to reverse or, at least, stop the progression of Macular Degeneration. $2,000 each.
The jury is still out on if this will work. There is only one study that I have found that says HCQ is effective against PMR.
They have tried me on different statins over the years and all have given me terrible muscle pain. While on Prednisone my colesterol got to 245 and my LDL was 183. I was put on Praluent. It acts like a statin, but it isn’t one. My husband gives me a shot every two weeks. The results were dramatic after only two shots. I have been on this medication for about three months and my results are great.Total cholesterol 151 and LDL 80. I have not had any problems. Hope this helps.
I don’t know what that is.
Just looked it up and no I don’t have that. Over the years I have had slightly high levels but I have controlled it with diet. I had MVR in 2012. AFib was detected about three years ago. Had subclavian arteries blocked and stents were put in. One occluded after a week. Then I found out I had GCA. I take four different heart meds.
Pain caused?? By bra strip
bladder control
PMR ECLIPSED BY OTHER AILMENTS
PMR diagnosis , Pred, and slightly high CK maybe statin induced pain.
Can a foot stress fracture be caused by PMR- weakened muscles?
