Return of PMR- statin: Hello, I’m wondering if... - PMRGCAuk

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Return of PMR- statin

Jennifergregory2 profile image

Hello, I’m wondering if anyone has a similar story. I had PMR 2014-2018. Tapered off pred v slowly and have been healthy since…..

until taking low dose statin 5mg/day last September. Within 4weeks I developed polymyalgic symptoms. My GP advised ceasing the statin. Unfortunately I still have PMR symptoms, bilateral shoulder/arm, pelvic, upper leg pain early morning . I’m waiting to see a rheumatologist but quite sure I’ll be on pred again. I’m managing with mobic(doesn’t really work), massage and swimming (this helps!).

Has anyone had a similar experience?

Jenny from Sydney, Australia

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22 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Subject has been discussed many times -on here as well as by medical profession.

General consensus of opinion seem to be there here is no evidence that statins cause polymyalgia rheumatica (PMR), but some studies suggest a possible association:

Anecdotal reports: Some patients have reported that statins caused their PMR.

World Health Organization database: A study of the World Health Organization's spontaneous reporting database found a possible association between statins and PMR.

Sure you will get some replies saying yes , but it’s sometimes it’s very difficult to definitely prove..

Reader7 profile image
Reader7 in reply toDorsetLady

This is the first I've heard of statins causing PMR. I had PMR from 2018 to 2021. In 2023, I was put on a statin by my cardiologist with no problems. I'd read that statins have anti-inflammatory effects which I thought would contribute to PMR not coming back. Go figure.

PMRpro profile image
PMRproAmbassador in reply toReader7

That was work about 20 years ago I think - bit they do have immunomodulatory effects so poke at the immune system. Maybe that is the problem.

PMRpro profile image
PMRproAmbassador

I tried statins twice after I already had PMR. Both times they appeared to cause problems - the first time I became very weak very quickly, within a week or so and it improved over a period of a few months when I immediately stopped them The second time it was looking more hopeful when I suddenly developed severe back muscle pain as part of the typical parttern for me of a flare so I stopped again, When Actemra sent my cholesterol level up even further I was put on Ezetimibe and bempedoic acid which is doing an excellent job.

Some statins list PMR as an adverse effect - some have worse records than others. This article is from a top PMR expert:

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

who is of the opinion that PMR and SAMS are different - but that "The possibility that SAMS may worsen the clinical manifestations of a PMR patient should be taken into account in clinical practice, and drug discontinuation should be proposed when deterioration or relapse is not otherwise justifiable."

Which sounds a bit like cake and eat it to me and surely satisfies everyone?

Jennifergregory2 profile image
Jennifergregory2 in reply toPMRpro

Many thanks for your reply. Yes , ‘have your cake and eat it’ is very apt!

Jennifergregory2 profile image
Jennifergregory2 in reply toPMRpro

Many thanks for all this info- much appreciated

Palgeo profile image
Palgeo in reply toPMRpro

SAMS?

PMRpro profile image
PMRproAmbassador in reply toPalgeo

statin-associated muscle symptoms (SAMS) - defined and discussed in the link

piglette profile image
piglette

Although not associated with PMR, my father turned into a zombie taking statins. When taken off them he became his old flamboyant, partying self again.

Jennifergregory2 profile image
Jennifergregory2 in reply topiglette

Thankyou .. statins can certainly give some people problems.

piglette profile image
piglette in reply toJennifergregory2

I heard about 20% possibly more.

Miacaro45 profile image
Miacaro45

I could not take statins for all the reasons mentioned. My doctor gave me Zetia which not only brought down my numbers but caused no side effects.

Petros-1931 profile image
Petros-1931

Happy New Year, in particular a pain-free one.

After my eye-stroke in 2023, my statin was raised from 20mg per day to 80mg per day, running on lifetime 5mg pred per day. No problems, as is clear, we are all different, one size doesnt fit all.

During this time, when i have external anxieties( my wife going to care home), losing friends, a couple of days plus 5 mg seems to hold potential extra pmr problems

at bay.

PMRpro profile image
PMRproAmbassador in reply toPetros-1931

Sorry to hear about your wife Petros - I hope she settles there and you are able to visit easily.

Petros-1931 profile image
Petros-1931 in reply toPMRpro

Thanks, settling slowly, cant visit

thanks to some sort of flubug epidemic 'in house'. What a start to the new year, but we in this wonderful group have learned how to be positive., so it will be ok.

Best regards.

PMRpro profile image
PMRproAmbassador in reply toPetros-1931

Oh dear - one of the quads probably: influenza A and B, Covid and norovirus. All rampant this winter ...

MarksPoint profile image
MarksPoint

Hi Jenny....I too am from Sydney, well nearby and exactly the same thing happened to me 3 years ago. I was advised by my cardiologist to take low dose statin - atorvastatin, just to protect my arteries, as I had just been diagnosed with Microvascular Angina. He said it was just a precautionary measure as I had zero plaque and low cholesterol.

So I did, and within 2 months I started with the now all too familiar signs of PMR pain. My cardio said to stop the statin immediately, but it was too late......coupled with the 1st Covid injection I soon developed GCA as well !!!

After 2 years of very painful and several forms of Prednisone and Actemra drug induced damage, I went into remission.

The next time I had a consult with my cardio he told me some statins will bring on PMR. !

Jennifergregory2 profile image
Jennifergregory2 in reply toMarksPoint

😮 what an ordeal Mark! I do hope you’re feeling better. I’m away at the moment but have an appointment with my gp in 2 weeks- I’ll be asking for prednisone as the PMR has definitely taken hold. Couldn’t get into a rheumatologist until March. Do you have a good rheumatologist near you? I’m in Mosman but prepared to travel if needs be. Thanks so much for reply

MarksPoint profile image
MarksPoint in reply toJennifergregory2

You could try BJC Health at Chatswood, that is where my Rheumo is. I can sort of recommend her but we had a few differences about things - I think I did so much of my own research, and I have unusual genetics, so it wasn't easy for her. I think there are a few Rheumos at BJC I think it will depend on who has availability. Good luck.

Jennifergregory2 profile image
Jennifergregory2 in reply toMarksPoint

Many thanks Mark. I’m seeing my gp soon. I too have read a number of research articles.. plus a few close relatives have had Pmr, so I’m thinking genes play some role here.

I agree, availability is often the issue.

Cheers, J

PMRpro profile image
PMRproAmbassador in reply toJennifergregory2

It is a pool of genes that predispose you to the immune system going wrong and causing PMR/GCA but it isn't a genetic disorder in the true sense of the word like coeliac disease or muscular dystrophy where a specific gene can be identified. The immune system still needs a trigger, environmental or infective or whatever, before it happens.

Jennifergregory2 profile image
Jennifergregory2 in reply toPMRpro

Thankyou.

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