Statins/PMR: I was put on statins 4 weeks ago due... - PMRGCAuk

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Statins/PMR

Sufferinginsilence profile image

I was put on statins 4 weeks ago due to high cholesterol readings at GP surgery. A week ago, I started experiencing muscle pain across shoulders, front and back - fine if I am sitting still but achey if I move in certain ways. I have been rubbing in Uddermint cream every evening as it seems to get worse at night and it soothes it a good bit.

I rang GP surgery this morning and was told she didn't think it was the statin because it would create more widespread aches rather than target a specific area. I'm sure I have read on here about statins causing increase in symptoms of PMR but my GP wasn't having it?

She has suggested it's possibly either arthritis (which I have in my neck and lower spine, not in my shoulders) or a flare up of PMR - currently on a slow taper between 6.5 and 6mg and that's the lowest I've got to. It's been reasonably stable recently though I have recently had a bad time with diverticular disease which might possibly have been causing me stress without me realising as I'm due to go off on a short holiday with a friend next week and I am a bit worried about it playing up while I'm away.

Anyway, I'm going to get blood tests done this afternoon for ESR (even though she knows I'm on steroids) and something else beginning with K that measures muscle breakdown so she can rule out the statins being the cause.

I know you can't give me answers but it's awful when you've got multiple things wrong and the GP wants to blame everything on the PMR...

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Sufferinginsilence profile image
Sufferinginsilence
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44 Replies
nallufl24 profile image
nallufl24

When I took statins it was my calves that were extremely painful. It was not widespread over my body. I’ve tried 3 different ones and it was always just my legs that hurt. After I stopped the pain went away.

Sufferinginsilence profile image
Sufferinginsilence in reply to nallufl24

Thanks Nallufl24, that's interesting it only affected your calves. So it might yet be the statins that are causing my discomfort. They're reluctant for me to stop the statins because they gave me three months to get the cholesterol down myself but despite my best efforts, it didnt improve.

PMRpro profile image
PMRproAmbassador in reply to Sufferinginsilence

It almost never does unless you had an utterly horrendous diet!

nallufl24 profile image
nallufl24 in reply to Sufferinginsilence

I tried with diet also. It didn’t work!

Poshdog profile image
Poshdog in reply to nallufl24

Also only my calves affected, couldn't walk up hills. GP decided I was statin intolerant sp prescribed ezetimibe which has only lowered cholesterol by 1 mark in 3 months. What next I wonder? 🤔

nallufl24 profile image
nallufl24 in reply to Poshdog

I now take Rapatha which is not a statin. It brought my cholesterol down to normal in just 2 months and I haven’t had any side effects.

Poshdog profile image
Poshdog in reply to nallufl24

Thank you for that info. I shall tell my GP when next see her

Kendrew profile image
Kendrew

Hi there,

Others with more knowledge will be along shortly, but just to say that I've been on statins most of my adult life and had one change of statin during that time because of muscle aches and pains.

The discomfort was not localised though (and I'm pretty sure normally wouldn't be) In my case it tended to affect both arms & legs... definitely not neck and shoulders though. I've never heard of statins affecting shoulders before, but that of course doesn't mean it may not be a possibility.

I think the test you weren't sure about may be Creatine-Kinase..... a test to measure the breakdown of muscle.

C-K is a muscle protein that enters the blood stream when muscles are damaged.

My gut feeling is that your aches & pains probably aren't related to your statins but others will be able to advise you further.

Sufferinginsilence profile image
Sufferinginsilence in reply to Kendrew

Thanks Kendrew. I just don't know what to do for the best, especially with this trip coming up, might increase the steroids a bit and see what happens.

PMRpro profile image
PMRproAmbassador

I only took a statin after developing PMR. The first time it nearly had me in a wheelchair after 10 days and the second time after 3 weeks I had a massive flare.

SHE might not want to admit it - but the most likely reason is the statin. And my creatine kinase (the most likely test) wasn't up at that stage - I just felt s%"& and couldn't move.

It doesn't mean all statins will do it - some people can get by on one but not another, Me - never going to risk one again! And the doctors have it on my notes with the other no-no drugs!

Sufferinginsilence profile image
Sufferinginsilence in reply to PMRpro

Thanks PMRpro, the discomfort I'm experiencing is rotten. It's making me feel nauseous, especially at night time. I will wait to get the blood results on Monday and see what they say but in the meantime, might increase my steroid dose a bit and see what happens. It's Atorvastatin I'm on.

PMRpro profile image
PMRproAmbassador in reply to Sufferinginsilence

That absolutely flattened me!!! But it wouldn't be the end of the world to say you want to stop it and see if the pain goes away, Pain that makes you feel nauseous is the end.

EngineerMatthew profile image
EngineerMatthew in reply to PMRpro

My nurse practitioner doubled my dose of statin about a week before I developed PMR. 4 months later when I got my first Rheumy, she stopped the statin. I almost forget this

Bcol profile image
Bcol

Lots of posts on statins on the site which have probably come up now you've posted about them. I've been on them for donkeys years with no problems. However, the first ones I had gave me worse all over muscle/joint pain than my OA. Rosuvastatin is the one I have and which gives me no problems at all. Only on a very low dose of 5mg though.

Rachmaninov2 profile image
Rachmaninov2 in reply to Bcol

A Cardiology Consultant changed my statin from Atorvastatin to Rosuvastatin because I had been experiencing pains in my legs which caused significant mobility issues. He had experienced similar issues himself with Atorvastatin. Unfortunately I still have the pain, which I suspect may be due to the Rosuvastatin.

Sufferinginsilence profile image
Sufferinginsilence in reply to Rachmaninov2

Thanks for this Rachmaninov2, I was hoping the GP would just suggest a different statin but she's ordered these blood tests instead! I'm going to take previous advice and stop them for a week or so and see if it makes any difference.

piglette profile image
piglette

This is probably the totally wrong thing to do, so don’t listen to me, but I would just stop the statins for a few days and see if things improved.

PMRpro profile image
PMRproAmbassador in reply to piglette

What I said!!!

Sufferinginsilence profile image
Sufferinginsilence in reply to piglette

Thank you Piglette. I might just do that instead of upping the Pred.

piglette profile image
piglette in reply to Sufferinginsilence

At least then you will know!

Sillydogsmum profile image
Sillydogsmum

As per PMRPro, only stopping the statin for a week or two will tell you which way to go. Otherwise all just a guess. Cramp from statins isn't always assoc with raised CK levels. There be dragons tampering with a succesful tapering without good reason and logic IMO.

MarksPoint profile image
MarksPoint

This is exactly what happened to me as soon as I was put on statins. After 2 months of shoulder neck and upper arm pain I did loads of research and found that for approx 20% of the population Statins have this negative effect. I showed my doctor some of the printed documents and she immediately told me to stop taking them. Within a week or so the pains disappeared. Do some research and I am sure you will find the appropriate studies.

Good luck.

KASHMIRI1 profile image
KASHMIRI1

I changed from atorvastatin to rosuvastatin things seem ok now

rocketman42 profile image
rocketman42

Ask your doc to prescribe Repatha (evolocumab). It’s an injectable that you administer yourself every two weeks. Absolutely zero side effects and my cholesterol was normal in four weeks.

diana1998 profile image
diana1998

I know a man a few years back who was put on statins and ended up in a wheelchair having been very fit. Unbelievably it took Addenbrookes 9 months and numerous tests to rule out everything else, that it was the statins. He and wife had even moved to a ground floor flat and all for nothing. Statins stopped....back to good.

Darkchocolate1 profile image
Darkchocolate1

I have pain in my back between the shoulder blades constantly. It interferes with my sleep. An MRI showed problems in my cervical spine to be the cause. Consulting back surgeon to see what can help.

Bridge31 profile image
Bridge31

Barbara O’Neill has some very interesting views/facts about cholesterol and statins ( Lipitor or Atorvastatin ) but I can’t find a way to give a link.

Goggle Barbara O’Neill on Heart health and cholesterol

PMRpro profile image
PMRproAmbassador in reply to Bridge31

She does have some very interesting views - that are generally regarded by the scientific and medical community to be misleading, dangerous and unsupported. Much of what she claims are not facts.

She may be perfectly correct about the low fat diet but her views on statins are less reliable. Cholesterol per se may well not be the whole truth about heart disease but there is no getting away from the fact that statins DO reduce the risk of cardiovascular events in men and women with a past history of cardiovascular events. This may be something where the marker of the action is to lower cholesterol.

Potter100 profile image
Potter100

When I started on Simvastatin I experienced pains in upper leg muscles. Changed to Atorvastatin & have no problems, been on them for years. Also taking Prednisolone & there has been no interaction.

Bandit01 profile image
Bandit01

I had bad shoulder pains come on a couple of weeks after starting on Statins. Stopped taking them and it went within a couple of days.Could try stopping them for a while and if pain goes then you know.

Good luck.

GEAGAL9 profile image
GEAGAL9

Hi, l am 71, been on statins for about a year, recently doubled the dose to 40mg as directed by my cardiologist , had pmr for 5 years now, at the moment on 2 mg prednisolone after reducing......yet again, no problems with the statins though, l realise we are all different obviously.

Pr0jection profile image
Pr0jection

I can't help with the statins as I've refused to take them even thought my cholesterol has always been high. I had a checkup with the cardiologist yesterday and he just kept on saying "very very good". However, I may be able to help with a suggestion to ease the pain of diverticulitis. I take goat's kefir every day. Three sips a day, morning, noon and night. It works a treat for me and also helps with my occasional gastritis. I also take probiotics. The combination of the two stopped my symptoms within a few days. Might not work for you, but maybe worth a try?

phebamom profile image
phebamom

Blood work to check your GFR, which is kidney function, along with blood creatinine level. If the problem is the statin then taking Coq10 supplement should help. Most common cause of leg muscle cramps is poor kidney function resulting in inability to secrete creatinine, a chemical made when the body converts creatin in meat to creatinine.

dougy8419 profile image
dougy8419

my Dr. tried to put me on statins. Total cholesterol was 237. It has dropped to 215 after using a supplement of plant sterols for 90 days. I researched plant sterols and even though I'm continuing to work on this, I had the same reluctance due to PMR/GCA. I have been off steroids after 4 years . I just am terrified of a flare. Obviously, I don't want to stroke either. This is just my personal experience. I wish you well!!!

Sufferinginsilence profile image
Sufferinginsilence in reply to dougy8419

Hello dougy8419, very pleased to hear that the plant sterols helped you. Can I ask what form you took them in? I swapped to Flora Proactive spread and milk for three months but it didn't impact my cholesterol readings at all. Maybe that just wasnt enough?

dougy8419 profile image
dougy8419 in reply to Sufferinginsilence

I take plant sterols daily in capsule form supplement. I take 800 mg daily.

proactive profile image
proactive

Personally, I would stop taking them! I was on them once for two weeks and felt the worst I'd ever felt in my life with aching. I weaned off of them by tapering the dose of the last two weeks of the prescription. I will never take them again. I urge you to look up info on the internet about the pros and cons of statins. I worked in Health Care for 45 years and have read many medical journal articles and studies that state that the original statin studies (reported by persons working for the drug company that produced them!) were reported in such as way that the benefits were exaggerated. They convinced Doctors to prescribe them to thousands of patients (for billions of dollars in profits!), but they haven't reduced the number of heart attacks in the population. Half of the people who have heart attacks have NORMAL cholesterol. Statins don't actually seem to prevent heart attacks, except perhaps in people who have had heart attacks previously. Do some reading and make an informed decision about taking them. Cholesterol levels can be lowered by taking plant sterols or adding plant-based fibre (brand Metamucil in Canada available at drug stores), but newest research seems to be showing that cholesterol isn't as much of a problem as initially believed whereas statins side effects can be harmful.

Sufferinginsilence profile image
Sufferinginsilence in reply to proactive

Gosh that's interesting Proactive. I will have a look at plant-based fibre products available in the UK. Thank you.

Sufferinginsilence profile image
Sufferinginsilence in reply to proactive

I already take Fybogel which seems to be similar to Metamucil?

Hosers2 profile image
Hosers2

While taking simvistatin for three years, I was diagnosed with rotator cuff damage and my GP recommended surgery (both shoulders, a year apart). Then my wrists and fingers started to ache. GP recommended carpal tunnel surgery in both wrists.

When I got to the point that I could not get up off of the ground because my hips wouldn’t let me, I decided to research the medications I was taking. Realizing that the cause of my health demise just might be the statins, I quit taking them, cold turkey. In thirty days, every single pain had disappeared.

Of course, five years later, I woke up with PMR, bringing back ALL of the previous pains, all at once.

Disclaimer: I am NOT a doctor. And my previous and current internal medicine physicians will vehemently deny statins caused any of this. (But my rheumatologist seems to think the statins may be a contributing factor).

I firmly believe Simvastatin (and other statins) are much more dangerous than the pharmaceutical industry want to admit. Big Pharma has been pushing statins for years, calling them the miracle drug, which every person over 50 should be taking. All the while, refusing to actually study the damages statins cause. Big profits = closed minds and sealed lips.

Bet ten to one that most PMR sufferers currently take, or previously have taken, statins.

As an aside, I took Simvastatin for at least five years. Over that five year period, my cholesterol level changed from 240 to 234.

Merryfield profile image
Merryfield

I have done well on statins for many years, way before steroids, but some people can’t tolerate them. Seems like you should give them a try and if they bring your cholesterol down without side effects, you are ahead of the game on avoiding stroke or heart attack. ( My only side effect was “difficulty” in loo.).

Doodlebug18 profile image
Doodlebug18

I share your symptoms and potential issues with statins. It is hard to tell if it is the statins, rheumatoid or PMR...kinda frustrating. I feel for you

Headwood profile image
Headwood

I’m almost convinced that it was statins that set me on my PMR journey. I’ll Never touch them again!

oaktree5 profile image
oaktree5

Generic stating 18 yes, prednisone 4 yes, cortisone injections to wrists/knee/shoulder , trust my internist implicitly and she is not anti stating. But doesn't go for prednisone except when major PMR flare, trying to show her that pred is not the danger it is thought to be in the US.

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