statins and PNR: in Year 5 of PMR and down to 4mg... - PMRGCAuk

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statins and PNR

Wolfman99 profile image
25 Replies

in Year 5 of PMR and down to 4mg of pred. I have struggled somewhat over the last 6 months and have had a number of flares…I’ve also been on Statins ( Atorvastatin ) for approx 15 months. I recently ran out of statins and after 5 days of not taking them I seem to feel better…it’s always difficult to measure but I was wondering if others have experienced issues with Statin and PMR? I’m inclined to give the statins a miss for a month and see how things go….would appreciate any input on this

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Wolfman99 profile image
Wolfman99
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25 Replies
Koalajane profile image
Koalajane

I am also on Atorvastatin and quite often give them a months holiday! It has never made a difference to me though.

Bluey-1 profile image
Bluey-1

After a TIA / Afib episode plus high cholesterol (8) I was put on 80mg of Atvostatin. I felt very odd on them and blood test results a couple of months on showed reduced cholesterol levels but heading towards liver damage. I never had any GCA symptoms recurring, just feeling not right on so many new meds. As my doc suggested I need the satins to ward off stroke but don’t need liver damage, all about risk. She took me off them for a month and bloods at that point were normalised. I was then put on a low dose of Rosuvastatin (5mg) and bloods a month or so later are still normal. I feel ok on these. Lipids will be tested in three months to check cholesterol levels and the dose amended if necessary. I have heard from others that sometimes you have to try different statins and presumably doses to see what works. Good luck.

Athas17 profile image
Athas17 in reply toBluey-1

My husband was put on 20 mg Rosuvastatin by his cardiologist. Because he is unable to handle a normal dose he was told to take it just once a week to reduce inflammation. It is the top of the line statin for that purpose. He was given 90 pills and I help myself to one every week.

strawclutching profile image
strawclutching in reply toBluey-1

I tried every statin in the book and had a reaction of vomiting, diahorea, dizziness etc. Rosuvastatin 5 mgs is the only one that I can get away with. My GP wanted me to increase the dose when my total cholesterol hit 6.0 but I chose to reduce my saturated fat intake (which was already low) and got down to 5.6 which was acceptable. It's a constant battle to keep control of so many health issues I have going on, and such a chore when I have to explain my history to every medic who comes up with the idea to change this or that without reading my notes. But I suspect I'm not the only one finding this who uses the National Health Service in the UK.

Bluey-1 profile image
Bluey-1 in reply tostrawclutching

You are not alone. You need a lot of energy to keep on top of it all. I’m hoping Rosuvastatin is doing its job at 5mg. It’s so tedious to keep explaining everything.

strawclutching profile image
strawclutching in reply toBluey-1

Certainly is. Good thing our brain cells are still working even though the rest of us is falling apart.

Bluey-1 profile image
Bluey-1 in reply tostrawclutching

After the TIA I doubted that but I’ve been doing Wordle and Spelling Bee every morning since! Most of the time I’m determined to keep on top of it all although I did have a big low over Christmas when I caught covid for the first time. As my friend said, FFS what a rubbish time you’ve had with one thing after another.

strawclutching profile image
strawclutching in reply toBluey-1

Anything you enjoy that keeps the cogs moving is a good thing to keep up if you can. I don't know if you get brain fog, but that makes it difficult to think positively. Touch wood, so far I've escaped Covid but I rarely go out, and after taking a writing course in 2020 I've self-published 2 novels and 3 cartoon-illustrated rhyming joke books. Just started my next novel and praying I'll get to the end before the next catastrophe. Wishing you well, Bluey, and yes, you've had a rubbish time but your determination shines through. Hang on to that.

piglette profile image
piglette

My father changed from a zombie to someone who was the life and soul of the party after stopping statins.

KASHMIRI1 profile image
KASHMIRI1 in reply topiglette

My brother in law was the same

piglette profile image
piglette in reply toKASHMIRI1

Proof of the pudding!!

Stargiver profile image
Stargiver

Hello - in my case it was very short lived, but on GP’s advice took that same statin. I thought I was having a flare but my GP said to stop them, and the pain diminished.

KASHMIRI1 profile image
KASHMIRI1

I had to stop atorvastatin because of aches and pains. I am now takin rosuvastatin. I have a lot of aches and pains and am waiting the result of an MRI at the end of the month. I did wonder this week to stop the statin for a week and see if I felt any better. Then thought I would wait for the scan result first.

Smithie49 profile image
Smithie49

I played tennis with a guy who was prescribed statins ( I don't know which one) and he became virtually disabled. However, within days of stopping them, he was back to playing again. Another friend put on them is really not well but won't stop unless her GP tells her . I think they need a lot further investigation before being handed put so regularly.

Selfbuilder profile image
Selfbuilder

Just for balance, I also take atorvastatin with no apparent problems....

Thelmarina profile image
Thelmarina in reply toSelfbuilder

Me too!

Wolfman99 profile image
Wolfman99 in reply toSelfbuilder

I thought that too….but with PMR you blame it for everything. It’s only now I’ve stopped taking the statins I realise the side effects I was having…

whitefishbay profile image
whitefishbay in reply toSelfbuilder

Me too - 20 mg per day for high cholesterol. I have aches and pains but probably would anyway...no way to know.

Koalajane profile image
Koalajane

there is quite a bit of research on statins. I think if you have a history of heart problems they can be good for you. I am sure I read somewhere where women without a history will not benefit from them unless cholesterol is really high.

tangocharlie profile image
tangocharlie in reply toKoalajane

Very interesting thread. My research so far is very general and I am certainly no scientist or medic. But from what I can gather, statins may lower cholesterol but that doesn't necessarily reduce your risk of heart disease or reduce atherosclerosis. The anti-inflammatory effect of statins may be protective, but then steroids might do the same thing and might not be all bad as Prof Quick and Kirwen hypothesized, saying more research is needed. Personally, I believe that lowering LDL and triglycerides through a low sugar high fibre diet should be as effective, but that doesn't make money for Big Pharma so it won't catch on.

PMRpro profile image
PMRproAmbassador

I have tried statins twice - the first time the weakness and fatigue almost had me in a wheelchair after 10 days and the second time I had a massive flare of PMR within a month although I had felt fine the first few weeks. It is now on my notes that I am statin intolerant and I am on ezetimibe which is OK as far as I can tell.

Statins are antiinflammatory so you would expect they might help - but for a lot of us, they don't. Some even list PMR as an adverse effect!

Thiago1396 profile image
Thiago1396

I have took simvistatins for 38 years - no problems

Polygolfer profile image
Polygolfer

hello, I take statins (Rosuvastatin, a newer generation statin) and have had no issues.

Sufferinginsilence profile image
Sufferinginsilence

I also was prescribed Atorvastatin, took them for two weeks and the pains and discomfort in my shoulders, hips and thighs was awful, similar to uncorrected PMR and I wasn't sure if it was a flare or the statins. Asked my GP if they could be changed and was eventually (after two weeks of not taking any statins and feeling back to 'normal') prescribed Rosuvastatin which I have now been taking for six weeks without any adverse reactions. Perhaps a change of statins would help?

Athas17 profile image
Athas17

The Boston Heart Lab has a cholesterol balance test. Markers for production and absorption can tell who should be taking a statin and who should be taking zetia. Statins are for the over producers and zetia are for the over absorbers.High absorbers can become worse on statins as the rate of absorption increases. High sterol diets and sterol enriched foods can make matters worse. Foods like olive oil, nuts and seeds are to be avoided.

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