Statins - side-effects, PMR, Giant Cell Arteritis

@isabelle7, It does sound a little confusing and if it were me I would want to have an in depth discussion with his doctor or rheumatologist before starting Actemra if there is a possibility that he has an infection. I think it can be difficult for anyone trying to navigate severe illnesses and only we know how we feel. I think it does help to write down all of your questions and then maybe plan your conversation with the doctor ahead of time.

Is this something you can discuss with your husbands care team or doctor?

@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!!

I am not sure what good the Statin does if they are not worried about cholesterol. I was on liptor for 3 yrs. started with flu like feeling. then legs and knees got sore , then extreme colon pain. I finally started bleeding. A colonoscopy revealed a lesion on the colon. They said I had Crohns disease. My family Dr said lets stop the liptor first and see. Cleared right up. I tried every drug with a tin at the end. Same thing. My cholesterol is high ended up with blockage. Now taking Repatha. There are drugs that can help with cholesterol now besides statins. I would say the prednisone is his worst enemy. Not sure if the new drug Kevzara helps with GCA but it works on PMR inflammation. They left him on prednisone because he probably cant get off of it. His cortisol levels are not restarting and they going back and forth with the dosage. My opinion the steroids will destroy his body.

It might be time to read about Metabolic Syndrome. Prednisone increases the risk of new-onset or worsening hyperglycaemia, hypertension, weight gain and hyperlipidaemia which are all elements of Metabolic Syndrome.

I took a statin for many years while I was on prednisone. I can't say atorvastatin caused any harm until I was off prednisone. I'm still struggling to lose my prednisone belly but otherwise I'm off 3 blood pressure medications and recently discontinued atorvastatin. The reason my rheumatologist decided to stop atorvastatin was because my cholesterol level was "too low." That combined with an elevated CK level raised some concern for statin induced myopathy which might contribute to lingering body aches and pains. The body needs cholesterol in large quantities but a lower cholesterol level as long as it isn't too low is generally considered better than too high of a cholesterol level.

I'm still in the process of recovering from more than 12 years of daily prednisone use. I have been off prednisone for 3 years and things are improving. My endocrinologist and I are still working on my problem with metabolic syndrome. I have managed to discontinue 3 blood pressure medications and atorvastatin. My endocrinologist said I should have been taking metformin to prevent insulin resistance even though I didn't develop diabetes from long term prednisone use.

I don't know how I feel about all the "preventative medications" prescribed to people taking prednisone. It was disconcerting when my total cholesterol soared to over 300 when I was on prednisone. That combined with a blood pressure in excess of 200/100 put me in the very high risk category for a major cardiovascular event. That event happened so I was in ICU for a couple of days and coumadin (warfarin) for life was initiated.

I think it is a good idea to try to prevent things from happening except you can't predict when or if things will happen. After being on warfarin for 10 years, it has now been discontinued. I think it prevented another cardiovascular event but no way of knowing for sure. My current risk of another cardiovascular event is considerably less since discontinuing prednisone so warfarin was stopped.

Unlike prednisone which wasn't so easy to discontinue, all my preventative medications were easy to stop after discontinuing prednisone. Actemra can also cause higher than normal cholesterol levels but that hasn't been a problem for me. I don't seem to need any "preventative medications" because of my monthly Actemra infusions.

@dadcue
It sounds like you’ve been through it all. I’m glad you’re improving. It is so hard to know which way to go when faced with the possibility of losing vision, strokes, aneurisms etc. That’s the position we were in when my husband developed GCA. Now to navigate through all this with added osteoporosis.

I didn't ever have osteoporosis but I do have excess bone formation in places where bone doesn't belong. My lumbar T-Score was +4 which isn't good either. I had my knees replaced and developed heterotopic ossification.

Heterotopic ossification (HO) is the presence of bone in soft tissue where bone normally does not exist. It is also called an aberrant healing process that was completely unexpected but possibly caused by excess inflammation. I seem to have too much bone in my lumbar spine but the surgeon says it isn't "good bone."

I try not to blame Prednisone for everything but it dysregulated many things.

@dadcue
Have you researched to see if prednisone could be the cause? It’s crazy the way our bodies work.

Sometimes there is no other option than to turn to drugs. Unfortunately some drugs can have some pretty nasty side-effects. And we never know how our bodies will tolerate them.

From everything I’ve read in prednisone. Taper as quickly as is safe. My husband is on Actemra to help taper more quickly and in hopes it will reduce the chances of a flare.

I hope the best for you. It sounds like too much bone can be as bad as not enough.

Statins are overprescribed with overstated benefits and understated side effects.

I was horrified to find that statins actually CAUSE calcium deposits in veins, which increases heart disease risk. I found a few doctors online advising people taking statins not to have vascular calcification score scans, as statins can increase the score. Then followed an uneasy discussion about how, somehow, the calcification caused by statins was nothing to worry about. Several people said their calcification score was low before statins and high after taking them, even though their doctors put them on statins as a calcification preventer.

I stopped taking statins a year ago, shortly after getting PMR. My heart attack 8yrs ago means my risk of another attack is higher than usual, so I researched all I could. Studies show statins could give me just 4 days more life if I take them. That's all, according to a meta-analysis of statin research. I'm happy to forego those 4 days to have perhaps 25 years free of statin side effects.

I make no recommendations for anyone else. Everyone should make their own informed decisions. Push doctors to present facts instead of routinely prescribing statins and attempting to scare patients into compliance, even without providing proof of measurable benefits.

Dr Paul Mason (honours medical graduate, Sydney University, Australia) has done a lot of research on statins. This is just one of his talks on the subject:
https://www.youtube.com/watch?v=I7r4j1u42V8

"Statins are overprescribed with overstated benefits and understated side effects."

I agree!

Prednisone is too! I wouldn't have been on a statin except for prednisone.

@megz
Thank you for your explanation of what happened to you and what you've learned about statins.

When our GP ordered them for my husband I had questions. Lots of questions. I was never satisfied with the answers. First, there are things within his chart that I've found to be errors and have pointed them out. They're still there. Like him being a long-time smoker. He's never smoked a day in his life. There were a few others.

From what I understood the doctor to say was that it didn't matter that he had decent cholesterol levels, it was a number of things that were factored in to make that decision. Yet I never got a good explanation of what those things were. Just that he's at an 11% higher chance of having a heart attack so they ordered statins. I've wondered if they included that he was a smoker (which as I said he wasn't) as part of the decision-making. I couldn't get a straight answer. Just that many things were factored into the decision.

He took Lipitor for a couple of days and developed a cough and cold-like symptoms. Given he was already sick with PMR, and just coming down with GCA (we didn't know he had it yet, we found out the following week), a cough and cold symptoms were dangerous for him so they stopped the statin. Now that he's leveled out there's talk of him starting them again.

After reading the possible side-effects again, and thinking about how sick he got last time he took them, we are leaning away from taking them.

My husband was healthy his entire life, never on prescription drugs other than an antibiotic but that was rare. Then last year in May he developed PMR and that's when he was put on high-dose prednisone. Nine months went by, he was tapering down his prednisone and we thought he was going to beat it. Then he started developing a host of new symptoms. The thing a person hopes and prays they won't get when they get PMR is GCA (giant cell arteritis - it's when your arteries swell, mostly in your head area but it can affect other arteries too.) He was diagnosed with it in Feb this year and has been on very high-dose prednisone, much higher than before. He's also taking a drug called Actemra which is the only FDA approved drug for GCA and it works to help get people off prednisone faster. Of course it comes with it's own host of side-effects but it's the lesser of two evils.

Getting sick is for the birds. I think it's even tougher for someone like my husband who's never been sick, never been in a hospital, never even had stitches. Now he's poked and prodded all the time and feels like crap a lot of the time. I'm hoping and praying we can continue to taper his dose of prednisone - it's all based on how his inflammation labs come out every other week - so he can be relieved of the awful side-effects of that drug. Because of taking it for so long and such high doses he's developed osteoporosis. The only light at the end of that tunnel is that people with steroid use induced osteoporosis have a better chance at rebuilding bone when they're off the drug.

Thank you for the link. I will definitely check it out.