1. < Polymyalgia Rheumatica (PMR)

Statins - side-effects, PMR, Giant Cell Arteritis

Posted by isabelle7 @isabelle7, May 23 4:36pm

My husband was diagnosed with PMR May 2023, GCA (giant cell arteritis) Feb 2024. He's been on high-dose Prednisone the entire time. Started on 30 mg May 2023, tapered to 12.5 mg by Feb 2024, developed GCA, three 1200 mg infusions of methylprednisolone followed by 80 mg prednisone daily for a few weeks, then tapered to now taking 30 mg per day.

He was just recently diagnosed with osteoporosis with a lumbar T-score of -3.4. I don't wish any of this on anyone, and will say that osteoporosis is probably the hardest to deal with because there's no clear treatment plan. There are many meds and lots of conflicting info. Doctors can be set on prescribing a certain drug that you read isn't best for your situation. It's hard.

But why I'm on this thread is to ask about the side-effects of statins. My husband was never on any prescribed long-term medications (only for bacterial infections, rarely) so being prescribed all these drugs has been a lot for him. He's 75.

He rated at 11% chance of stroke, heart attack etc and was prescribed a stating. He does not have high cholesterol. Well, it's a little high but the doctor said it's fine because his good cholesterol balances it out.. He put him on Lipitor. Within days of taking Lipitor he developed cold-like symptoms and a cough, which was awful because he was at the same time coming down with GCA (we didn't realize this for a few more days.)

He's been through a lot since that time (Feb 2024) and was asked to stop the statin and everything other than Prednisone for a while. Then he started on Actemra injections, low-dose aspirin, a preventative antibiotic, still on prednisone and now they want to add back the statin. We have reservations.

Question. When people have cold-like symptoms from a statin do they actually have an infection? That's what is confusing. Because he cannot be on Actemra with an infection. So if he develops congestion, cough etc he has to stop the Actemra. It seems counterproductive to start the statin when he's doing well on tapering the prednisone and on the Actemra.

Any thoughts would be greatly appreciated. This is a lot to navigate for people who have never dealt with severe illnesses like this. We have been very fortunate. I was sick with environmental illness in the 90s, which took me 4 years to navigate and heal, but other than that we've done quite well. This hit us really hard especially since my husband was so healthy all his life. We eat healthy, he always exercised, we spend lots of time in nature - this came out of nowhere.

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

DadCue | @dadcue | May 26 9:12am
In reply to @isabelle7 "ps my little chart didn't work in my last. post so I'll do it again here..." + (show)
@isabelle7

ps my little chart didn't work in my last. post so I'll do it again here differently.

Cholesterol levels:
2019 his total cholesterol was 219, his HDL was 66 and LDL was 129
1/2024 total was 186, HDL was 59 and LDL was 115
5/2024 total was 256, HDL was 110 and LDL was 138 (after high doses of prednisone starting 2/2024)

Jump to this post

Well ... maybe just wait and see what the next lipid panel result shows. Big jump after Prednisone was started but one result doesn't establish a trend.

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1 reply
emo | @emo | May 26 11:02am
In reply to @isabelle7 "@johnbishop Hi John, Thanks for your response. He doesn't currently have an infection. Our concern is..." + (show)
@isabelle7

@johnbishop
Hi John,
Thanks for your response. He doesn't currently have an infection. Our concern is that when they started him on Lipitor in Feb he developed a cough and cold-like symptoms. Around the same time he developed Giant Cell Arteritis (GCA) so they stopped the Lipitor and all supplements, just giving Prednisone until we figured out what was going on. That's when we got the GCA diagnosis.

Fast-forward, and there is talk about him restarting the Lipitor. But last time it caused a cough and cold-like symptoms and we want to avoid him getting any kind of infection because he's on Actemra. Things are going as well as could be expected. He's lowered his prednisone from 80 mg per day down to 30 mg per day with the help of Actemra, and we're still in the tapering stage. Some of his worst side-effects from Prednisone are lessening and we'd like to keep on this good path. The goal is to get him off prednisone or at least way lower dose an stay on Actemra for a couple years, according to his doctor.

Throwing a statin in at this point scares me.

It's really hard communicating with his rheumatologist. We have an appointment in later June which is good. In-person. I tried to get a virtual appointment and none until August. Which is frustrating. We'll also contact our GP who has been helpful with some things.

I appreciate all the responses I've gotten from people on this site. It's so helpful!!

Jump to this post

My quick take: If you and your husband aren’t comfortable with adding a statin while he’s continuing to manage the GCA/PMR symptoms and prednisone taper, I would talk with his doctor about it. And perhaps tell them about your concerns. My dad’s care team has mostly been receptive when we’ve told them it’s a lot already with him recovering from PMR and a stroke, and managing a prednisone taper. He tends to get severe side effects to new medications and adding a new thing on top of everything would just be too much.

It is a “risk” because my dad has athlerosclerosis, but we decided it’s a greater negative impact on his quality of life to throw a statin on top of everything else.

Some doctors push back on that because there’s official “guidance” that dictates when to recommend a statin to a patient. So the worst doctors we’ve seen just seem like they’re on autopilot and see his labs, in combination with his age, and the plaques and push a statin. But the doctors who know him better thankfully take a more holistic approach.

My dad had a very similar experience where statins clouded the picture—right down to what you said about your husband rarely taking medication and it all being a lot. My dad was prescribed the highest dose of Lipitor despite having good cholesterol because he has athlerosclerosis. He’d never regularly taken medication and had bad side effects that masked the PMR he was developing. So we also stopped the statin to figure out what was going on. We realized it was best not to resume the statin in the end.

It’s a risk either way, but the hard part is figuring out what you’re both comfortable with. Wishing you and your husband all the best!

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isabelle7 | @isabelle7 | May 26 11:42am
In reply to @dadcue "Well ... maybe just wait and see what the next lipid panel result shows. Big jump..." + (show)
@dadcue

Well ... maybe just wait and see what the next lipid panel result shows. Big jump after Prednisone was started but one result doesn't establish a trend.

Jump to this post

@dadcue

Thanks for the advice! Any idea how soon it would make sense to re-test?

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