PMR & Statins

Posted by dlb3 @dlb3, Jun 25, 2024

Recently, I’ve been trying to research out the possible connection of PMR and the use of statin drugs. Does anyone have any information they would like to share regarding this subject matter. Apparently there is now some concern that statins “might” cause PMR however, it is hard to sort out what is PMR pain and what is the muscular weakness/pain caused by the statins. I have been on statins, most recently Crestor, for a total of 20 years. I decided to take a statin “vacation”10 days ago. I recently had my cholesterol checked…. my results were all within range.

In November 2023 I was diagnosed with giant cell arteritis (GCA) & polymyalgia. I am told that both of these often go hand-in-hand. I was put on 60 mg of prednisone to control the inflammation in my head. (42 days of headaches). Once the GCA was under control and polymyalgia pain was diminished. I was able to start a prednisone taper per my rheumatologist. April of 2024 I was down to 3 mg. The month of May I dropped down to 2 mg when I hit the wall and the polymyalgia returned. In June. I upped my prednisone to 3 mg. With “minimal” pain relief. I have experienced many side effects while on the prednisone. Currently I have taken myself off of the statins and the prednisone to see if I can manage my pain. I have also been following an anti-inflammatory diet for several months and I am now trying to add in some physical therapy exercises geared to help with PMR. I have been off prednisone for almost a week and I do not see that much of a difference in the pain level from 3 mg to zero. We shall see what happens.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I’ve been recently diagnosed with PMR, my symptoms started at the same time I started talking Red Yeast Rice for high cholesterol…has anyone else experienced this?

REPLY
@caddisrio

I’ve been recently diagnosed with PMR, my symptoms started at the same time I started talking Red Yeast Rice for high cholesterol…has anyone else experienced this?

Jump to this post

Hello @caddisrio, Welcome to Connect. I've not used red yeast rice or taken statins when my PMR was active but hopefully others with experience can share. I would be a little suspicious of the timing of being diagnosed with PMR around the same time as starting taking red yeast rice if it were me. Here's some information on the topic while you wait for others with experience to respond.

"Can red yeast rice cause muscle and joint pain?
Red yeast rice contains a chemical that is the same as the prescription drug lovastatin. Because of this, it might cause the same side effects as this drug, including liver damage, severe muscle pain, and muscle damage."
--- Red Yeast Rice - Uses, Side Effects, and More: https://www.webmd.com/vitamins/ai/ingredientmono-925/red-yeast-rice.

--- Scientific opinion on the safety of monacolins in red yeast rice: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7009499/

Have you discussed your question/concern with your doctor?

REPLY
@johnbishop

Hello @caddisrio, Welcome to Connect. I've not used red yeast rice or taken statins when my PMR was active but hopefully others with experience can share. I would be a little suspicious of the timing of being diagnosed with PMR around the same time as starting taking red yeast rice if it were me. Here's some information on the topic while you wait for others with experience to respond.

"Can red yeast rice cause muscle and joint pain?
Red yeast rice contains a chemical that is the same as the prescription drug lovastatin. Because of this, it might cause the same side effects as this drug, including liver damage, severe muscle pain, and muscle damage."
--- Red Yeast Rice - Uses, Side Effects, and More: https://www.webmd.com/vitamins/ai/ingredientmono-925/red-yeast-rice.

--- Scientific opinion on the safety of monacolins in red yeast rice: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7009499/

Have you discussed your question/concern with your doctor?

Jump to this post

I only took it for about 24 days…I stopped taking it in November, when I could hardly get out of bed let alone into it, pull up my pants, raise my arms I.e.. I went to physical therapy, which helped. I was referred to a rheumatologist in January. I find it very puzzling that the PMR attacked my body at the same time I started taking the statin.

REPLY
@caddisrio

I’ve been recently diagnosed with PMR, my symptoms started at the same time I started talking Red Yeast Rice for high cholesterol…has anyone else experienced this?

Jump to this post

Something very similar happened to my father, so I looked into this at the time. There are some case reports associating PMR with statin use, but nothing conclusive. I do believe statins can make it more difficult to diagnose PMR because of the association with muscle pain.

It’s my personal opinion it’s so hard to get PMR diagnosed because it mainly strikes older people. Other than the lack of awareness with many providers, I feel they dismiss it as “normal aches and pains” and fatigue due to aging. And if you’re unfortunate enough to have a PCP who is either super busy or just dismissive, it takes a lot of wherewithal to advocate for yourself. But…that’s a whole other soapbox.

The thing is, there are many confounding factors because the very people most at risk of developing PMR are also very likely to be prescribed statins.

I did find this article that discusses statins prompting a different type of autoimmune muscle disease: https://www.hopkinsmedicine.org/news/media/releases/statin_use_linked_to_rare_autoimmune_muscle_disease_study_finds

What I found most interesting is they wrote about how it’s possible that a statin in a small number of people can prompt autoimmunity—so I figured, if this is possible for the disease referenced in this article, why couldn’t it be possible with PMR? No proof of course, but if viruses, psychological trauma, and other chronic stress are known to affect the immune system, I don’t see why a medication couldn’t do it. And as risky as high cholesterol is, the body also needs cholesterol; we can’t completely understand what’s happening with medications.

In the end, I’ll never know if statin use caused my dad’s PMR, but I believe it did. Until he started a statin, he took no other chronic medication and never had any significant health problems (though he certainly had risk factors for stroke and heart disease—we don’t deny that), and his PCP put him on the highest dose possible for statins even though he had good cholesterol.

For someone who had no prior health problems except mild back pain and a rotator cuff injury, he developed a severe case of PMR within less than a year of starting atorvastatin (Lipitor). It took over a month to get a diagnosis, mostly because his PCP was first clueless and then didn’t believe us when we brought up PMR. Eventually, he came around and prescribed prednisone with no other guidance so we had to find a rheumatologist ourselves.

He was never evaluated for GCA, and two weeks later he had a severe stroke. His condescending neurologist tried to jam statins down my dad’s throat (not literally) because it’s “standard of care.” We refused.

Is it connected? We’ll never know. Do I acknowledge that dangerously high cholesterol also must be treated? Yes.

But am I suspicious? Definitely. One year post stroke and my dad is still not taking a statin. We will exhaust every other possible option before going that route. Between the stroke, the PMR flares, the prednisone taper, we just don’t want to rock the boat too much.

And I find it really interesting that both his new neurologist (who has more of a whole health and integrative approach) and cardiologist were both aware of the “association” between arthralgias and statins—they brought it up before we did.

It is tough to weigh the pros/cons. It could also be the red yeast rice or statin can cause muscle pain that worsens the experience of PMR and vice versa. But you ask an important question.

REPLY
@caddisrio

I’ve been recently diagnosed with PMR, my symptoms started at the same time I started talking Red Yeast Rice for high cholesterol…has anyone else experienced this?

Jump to this post

The problem with red yeast rice is your dose of statin is indeterminate. If you are are in need of a statin rechallenge make sure you take it with COQ10 and have
your doctor monitor your muscle enzymes and inflammation markets.

REPLY
@emo

Something very similar happened to my father, so I looked into this at the time. There are some case reports associating PMR with statin use, but nothing conclusive. I do believe statins can make it more difficult to diagnose PMR because of the association with muscle pain.

It’s my personal opinion it’s so hard to get PMR diagnosed because it mainly strikes older people. Other than the lack of awareness with many providers, I feel they dismiss it as “normal aches and pains” and fatigue due to aging. And if you’re unfortunate enough to have a PCP who is either super busy or just dismissive, it takes a lot of wherewithal to advocate for yourself. But…that’s a whole other soapbox.

The thing is, there are many confounding factors because the very people most at risk of developing PMR are also very likely to be prescribed statins.

I did find this article that discusses statins prompting a different type of autoimmune muscle disease: https://www.hopkinsmedicine.org/news/media/releases/statin_use_linked_to_rare_autoimmune_muscle_disease_study_finds

What I found most interesting is they wrote about how it’s possible that a statin in a small number of people can prompt autoimmunity—so I figured, if this is possible for the disease referenced in this article, why couldn’t it be possible with PMR? No proof of course, but if viruses, psychological trauma, and other chronic stress are known to affect the immune system, I don’t see why a medication couldn’t do it. And as risky as high cholesterol is, the body also needs cholesterol; we can’t completely understand what’s happening with medications.

In the end, I’ll never know if statin use caused my dad’s PMR, but I believe it did. Until he started a statin, he took no other chronic medication and never had any significant health problems (though he certainly had risk factors for stroke and heart disease—we don’t deny that), and his PCP put him on the highest dose possible for statins even though he had good cholesterol.

For someone who had no prior health problems except mild back pain and a rotator cuff injury, he developed a severe case of PMR within less than a year of starting atorvastatin (Lipitor). It took over a month to get a diagnosis, mostly because his PCP was first clueless and then didn’t believe us when we brought up PMR. Eventually, he came around and prescribed prednisone with no other guidance so we had to find a rheumatologist ourselves.

He was never evaluated for GCA, and two weeks later he had a severe stroke. His condescending neurologist tried to jam statins down my dad’s throat (not literally) because it’s “standard of care.” We refused.

Is it connected? We’ll never know. Do I acknowledge that dangerously high cholesterol also must be treated? Yes.

But am I suspicious? Definitely. One year post stroke and my dad is still not taking a statin. We will exhaust every other possible option before going that route. Between the stroke, the PMR flares, the prednisone taper, we just don’t want to rock the boat too much.

And I find it really interesting that both his new neurologist (who has more of a whole health and integrative approach) and cardiologist were both aware of the “association” between arthralgias and statins—they brought it up before we did.

It is tough to weigh the pros/cons. It could also be the red yeast rice or statin can cause muscle pain that worsens the experience of PMR and vice versa. But you ask an important question.

Jump to this post

I was recent spoke to a physical therapist that associates PMR with statins.

REPLY
@caddisrio

I’ve been recently diagnosed with PMR, my symptoms started at the same time I started talking Red Yeast Rice for high cholesterol…has anyone else experienced this?

Jump to this post

Back in 2017 I had been taking RYR for about a year. My doctor previously asked me to go on a statin as my cholesterol was up around 200. I choose to try RYR instead. In Sept of 2017 things started happening that I knew werent right; shivers, night sweats, headaches, neck pain, large weight loss, etc. For a month and a half I saw numerous doctors who ran every test they could think of. Finally I got the news, GCA AND PMR. And not a moment too soon. I was told I was 36 hours away from losing my eyesight permanently. They told me I was way too young to have gotten GCA (I was 54 at the time). They couldnt tell me why I contracted this disease. I was put on heavy doses of prednisone. I was switched to Actemra after 8 months. With Actemra my cholesterol shot up to 270. I was put on Atorvastatin. Was on it for 4 years when I started getting leg pain every day. I told my pcp and she switched me to rusovastatin and the pain went away.
My sister was on RYR and she developed necrotizing myositis. She was told that the RYR caused it because she has a gene that causes statin intolerance. She is now having blood infusions to help stop the damage to her muscles.

REPLY
@caddisrio

I’ve been recently diagnosed with PMR, my symptoms started at the same time I started talking Red Yeast Rice for high cholesterol…has anyone else experienced this?

Jump to this post

We certainly need to know more about PMR and statin use. Studies do show inflammation and autoimmunity
cause an increased risk of major cardiovascular events
with PMR. Statins would be the most indispensable
prevention. PMR developing on statins or red yeast rice
would give you and your doctor a therapeutic conundrum.

REPLY

I had a statin reaction 20 yrs ago. I have Familial Hypercholesterolemia. But I discontinued and was just living with high numbers(250). The weakness in the muscles of legs is very similar. I could see where it would be possible to link the two. Since no one has found the link for what causes PMR, it does seem many things can trigger our already sensitive immune systems. I developed what they initially diagnosed as Crohn's disease. After discontinuing the liptor and it all disappeared they changed it to statin allergy. I cant take any medication with a statin. Although it left me with a little IBS, I would say great your off the prednisone if you can manage the pain. Painkillers may help. But you need to be very careful just stopping prednisone. It can have serious other concerns. Your body requires cortisol and after two weeks of prednisone your pituitary shuts down. I would read up on adrenal insufficiency, The AI can also restart your PMR.

REPLY

There are some case reports and reviews associating statins with PMR and other autoimmune diseases if you search the two terms together online. I tried to find an article I referenced before as an example, but couldn’t find it.

We believe my dad got statin-induced PMR because of the sequence and timing of the events, but there’s no way to prove this. He was on a statin for a much shorter time.

The trouble is the population that experiences PMR is age 50 and older, and that’s the same population that has a higher likelihood of taking statins. And as you said, what makes it difficult to diagnose is the known muscle pain/myalgia side effect. My dad’s PMR was blamed on that, but it didn’t get better and only got worse when he stopped the statins.

It’s sort of like how others have shared they believe a vaccine triggered PMR. It’s not impossible, but if one is older and already has a risk of developing PMR, it’s hard to say if it was for example, the shingles vaccine that caused it. The same group that gets PMR is far more likely to get a shingles vaccine, so it’s not a surprise than many people with PMR also had a shingles vaccine.

I’m not trying to minimize what you’re saying. I’m agreeing it’s really hard to figure out. In my family’s case, we do believe it was the statins.

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