Statins: Just became aware of a connection with... - PMRGCAuk

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Statins

Gary1310 profile image

Just became aware of a connection with Statins and PMR. I have decided to stop taking my daily 10mg statin. See my Rheumatologist next week. I will discuss it then.

45 Replies
PMRpro profile image
PMRproAmbassador

I have always refused to take statins - on the one occasion I did agree I nearly ended up in a wheelchair. That is noted in my medical notes as a contraindication now. But I am female and have not had a previous cardiovascular event - the research suggests statins don't prevent anything for my demographic.

It depends why you have been put on one - is there a good reason besides the pressure of general opinion? Not all cardiologists support their use but you do really need to discuss it with your cardiologist if you have one,

Gary1310 profile image
Gary1310 in reply to PMRpro

Just high cholesterol ....bit overweight.

PMRpro profile image
PMRproAmbassador in reply to Gary1310

Have you tried the other options? Like more exercise and weight loss and possibly diet? That can make a significant difference too. But do discuss it.

Gary1310 profile image
Gary1310 in reply to PMRpro

Well did lose weight by exercise, then hit with PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Gary1310

If you have high cholesterol - then statins probably needed.

Do you know what your reading are?

HeronNS profile image
HeronNS in reply to DorsetLady

Except an edition of Trust Me I'm a Doctor followed one of the presenters (male) through a few weeks while he changed his diet and ended up reducing his cholesterol levels at least as effectively and rapidly as a statin would have done.

bbc.co.uk/programmes/articl...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Yes saw that series when it first came out in UK.

But if it’s hereditary it doesn’t always work.

I worked with a colonel in the British Army - fit as a fiddle, looked 15 years younger than he was, ran every lunch time but his cholesterol was way above what it should be. Doctors in a perpetual state of panic over it!

HeronNS profile image
HeronNS in reply to DorsetLady

But I expect this is far less common in the general population than other causes and maybe everyone else benefits from changes to life choices. Statins, like bone medications, should not be first line treatment until proven only intervention which will help.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

I’m not disagreeing with you... the non medical way is always the best first choice in my view also.

But as we know....particularly on this forum it doesn’t always work....so sometimes medication is the only way.

Gary1310 profile image
Gary1310 in reply to DorsetLady

Not sure what they were pre statin. It has been 10 yrs. Now with Statins, they are normal.

Theziggy profile image
Theziggy in reply to PMRpro

I have always refused statins too!

prunus profile image
prunus in reply to PMRpro

I found it interesting to read that you will not take statins. My husband was put on them when he had his first stent fitted at Harefield in the teens of years ago. He complained and complained to all the Drs but not one of them stopped them. That's why he can barely walk now. When he went in for his second stent he refused to take them and never missed them. My Dr had me go and see him and tried to get me on them. I said not after what has happened to my husband. We had walking holidays up to that point.

Good luck, but keep an open mind. It’s a tricky one, because it seems that unless the wide consensus is that there is a problem with a medication and that is written into the various standards docs are supposed to adhere to, it takes a brave person to stop a drug that is supposed to prevent harm. There is so much research about of differing quality that docs can’t be abreast of all of it; some docs acknowledge that and some don’t. When drugs have been hailed as the answer to a problem it takes time to burst that bubble when warnings start to emerge, especially when the fear is that large populations will stop taking it. For some with high risk cholesterol levels eg familial problems, the risk benefit ratio is more stacked towards taking it. As a just in case med for much lower theoretical risk the benefit isn’t as clear, especially without a crystal ball. It is your choice of course but you may find that the doc may not be totally supportive but at least they or someone else can look at your risk profile with you if you are determined to stop it.

HeronNS profile image
HeronNS in reply to SnazzyD

I've always thought it rather interesting that at one time there was a, not altogether joking, suggestion that statins should be put into drinking water (this in US of course) they were considered to be so brilliant.

SnazzyD profile image
SnazzyD in reply to HeronNS

😮

HeronNS profile image
HeronNS in reply to SnazzyD

I think I read about it in Overdo$ed America, not sure.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

It has been talked about - lord NO!!!!!!

HeronNS profile image
HeronNS in reply to SnazzyD

ncbi.nlm.nih.gov/pubmed/227...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi

There has been much comment on here - and other places - regarding the good/bad effect of statins.

I was on them way before GCA - and although I did have to try various brands to find one that suited (muscular pains) - they didn’t cause any great problems - am on a very low dose now.

As SnazzyD says it’s your choice , but please take advice before stopping - and as is the case with most medication don’t just stop without GP knowing.

Baileyw06 profile image
Baileyw06 in reply to DorsetLady

Just make sure they follow up with liver tests. My Doctor put me on statins after a mild silent heart attack and I went from normal to a fatty liver in 3 months.She took

Me off statins and within 6 weeks I went back to normal.She put me on baby aspirin daily.

I lost weight and been on low carbs and my cholesterol reading went down .

Thanks... I will tell him I stopped. I see him next mont, see my Rheumatologist next Fri.

I have PMR/GCA and I wasn't taking a statin. With hereditary high cholesterol my doctor has always worried that I didn't take one. Despite losing a lot of weight (and was under 60kg anyway) it barely registered. I've succumbed and have started a low dose but take ubiquinol to hopefully counteract negative effects.

Hi Gary, interesting that. I first had pains in my arms and shoulders in early 2017, I saw an orthapidic guy who suggested it could be my statin OR PMR and to get tested. I did the doctor stated blood tests showed slight signs of pmr although I wasnt to convinced. Im on 10mg statin. Has it improved since you came of your 10mg statin, I believe there are alternatives. Col

Gary1310 profile image
Gary1310 in reply to SRIXON

Yes, interesting. I just stopped Statin yesterday. Not sure what to expect. I started 10 yrs ago...seems my feet started to swell about that time. I was diagnosed with PMR. January this year.

SRIXON profile image
SRIXON in reply to Gary1310

I have issues with my feet swelling GP says its due to my BP meds Felodipine.

PMRpro profile image
PMRproAmbassador in reply to SRIXON

Why hasn't he tried something else? The -dipines (amlodipine) have a name for that - anyone would think they were the only BP meds!

Gary, do you have a coronary calcium score? Depending on your age, and a CCS, you may not need statins. They are frequently over prescribed. Ask your GP about having a coronary calcium test to see what your score is. This test shows how much bad stuff is actually in your arteries. Good luck.

Thank you. Will ask my GP to do the test.

After a double by-pass operation, I was put on statin, but found to be allergic to them. So glad not to take them. (I think it was the doctor's, not my regular MD< knee jerk reaction)That was 5 years ago. My combined cholesterol is high, but when broken down the HDL, good stuff, is so much higher than the bad that it makes me "low risk." Sometimes newer medecines/treatments come on the market and seem to be automatically prescribed, but are not necessarily better than the "old" treatment.

One of the stations has PMR listed as a possible side effect! I have been on stations for about 20 years but have decided to stop. It seems ridiculous to be taking a medicine that could be causing the other, diagnosed condition. I am getting my cholesterol level done after 3 months without the statins. Watch this space!

Gary1310 profile image
Gary1310 in reply to Hirwaen

Will watch for your comments....good luck!

Spell checker! That should have been statins not station!

Thank you, didn’t know PMR was listed as a possible side effect on a Statin.

PMR is a known possible side effect of statins, as is various muscle aches and possible muscle damage. Of course, not all will be so effected.

Generally, if one has no known heart disease or history of a cardiolovascular event, statins MAY not be needed.

After having a heated discussion with my doctor, who is also a friend, I decided to stop taking a statin and to try plant sterols instead. I take Cholestoff, by Nature Made,

(USA), and it has worked wonders for me.

Numbers are good and I have no side effects from the supplement.

I am not suggesting this would be the answer for everyone, but with my aches and pains from PMR, I decided to remove statins from the equation.

Gary1310 profile image
Gary1310 in reply to Manchild

...going to Walgreens tomorrow to buy Cholestoff......Thanks!

Yes my statins were stopped when I first developed pmr symptoms because the Dr thought they were the cause

Can somebody give me a reference to this information that lists PMR as a possible side effect of statins?

Mahnahvu profile image
Mahnahvu in reply to rosie_jones

ncbi.nlm.nih.gov/pmc/articl...

PMRpro profile image
PMRproAmbassador in reply to rosie_jones

And more recent:

acc.org/latest-in-cardiolog...

acc.org/latest-in-cardiolog...

where they say

"Concurrent use of oral corticosteroids: increases the risk of developing muscle complications by three-fold in females and two-fold in males."

which is as good a reason as any I can think of for patients who already have PMR and are on steroids (as I was) NOT to take statins.

...I just Googled PMR and Statins

After what happened to my husband I would not touch them at any price. He can barely walk now. I know a number of people who feel the same but some on a low dosage seem to be OK. You have to make up your own mind but watch your muscles.

PMRpro profile image
PMRproAmbassador in reply to prunus

I was assured I would be closely monitored but it happened too quickly for that! They smuggled the tablet in while I was in hospital - handed it over and it was only because I asked I was told it was "for your blood"! Which of course didn't wash with me and I demanded to know what it was. I refused and justified my objection so was told they'd give me a different one with fewer adverse effects. Yes - if they said so! But the real insult was that on disharge I was expected to pay for it myself as it was not the cheapest generic they had on the list.

prunus profile image
prunus in reply to PMRpro

Our problem was that it was in the early days of statins. A few years ago an orthopaedic surgeon from America commented on my husband's walking whilst we were on holiday, and I enlightened him on the fact it was statins. He said at that time no-one in the medical profession was prepared to break ranks, that came later. His views were very interesting to us non-medics.

PMRpro profile image
PMRproAmbassador in reply to prunus

Be interesting to me too! I do understand why they don't like to break ranks - look at the vitriol Aseem Malhotra is having thrown at him.

Thank you.

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