Statins - side-effects, PMR, Giant Cell Arteritis

"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.

@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!!

@isabelle7
I doubt Lipitor caused the cough etc. But it’s not obvious to me why he needs it at all. Low Cholesterol count, 11% risk - neither suggest priority to me. I would tell his primary that you’d like to move Lipitor to the back of the shelf for now while you have more pressing variables to monitor and control.

@dadcue
I couldn't agree more. Question. Why did you have to go on a statin because you were on prednisone? Just curious if you don't mind my asking.

In our case, there was no other option but to take prednisone. My husband was at risk of losing his sight, a stroke, aneurysm or death. His inflammation levels were off the charts and his temples were swelling. It was really frightening. So there are times when it's needed and it's a life saver.

Having said that, taking a statin isn't life and death and I'm not sure he even needs them. I posted a response to megz that we really didn't get a good explanation of why they're being prescribed. He tried them for a couple days, came down with an awful cough and cold-like symptoms so he had to get off them. Now they're pushing us to get him back on them. I'm asking why when the doctor just wrote us a note saying his cholesterol levels are fine. One is a little high but the good cholesterol is great and he said they balance each other out and not to worry. His chart says he was a long-time smoker. He's never smoked a day in his life. They said not only cholesterol is considered when prescribing a statin, other health markers are considered. His mom had some medical issues like diabetes and some heart issues. So I get they're probably using that. But are they also using the incorrect info that he's smoked most of his adult life? I've asked for that to be removed multiple times but it's still in his chart and they tell me "small mistakes in the chart are normal, not to worry." Hmmmmmm Why not just remove the wrong info? I guess I could push the issue.

"Prednisone is incredibly effective in reining in inflammation but can also quickly and sometimes dramatically raise LDL levels and lower HDL levels. Studies suggest that high-dose prednisone can cause this in a matter of weeks and increase your systolic blood pressure at the same time"

This happened to my cholesterol levels after I was on moderately high doses of prednisone daily for PMR. It was all part of the increased risk of metabolic syndrome for people on Prednisone.

I think doctors are too proactive sometimes and prescribe "preventative medications" for known Prednisone side effects.

My cholesterol levels and blood pressure skyrocketed after PMR was diagnosed. I went from no cardiac history to 3 blood pressure medications and a statin soon followed. All these medications were started by a cardiologist when I suddenly developed a cardiac arrhythmia and left ventricular hypertrophy (LVH).

Until this time, I was riding my bicycle regularly and was very fit and trim --- all muscle and no fat. I loved to exercise. Prednisone made me the opposite. One of my first complaints after being on Prednisone for a year was "exercise intolerance." My primary care doctor ordered an exercise tolerance test but it was "normal." I maintained my exercise intolerance wasn't normal for me. A few months later I was out doing a 30 mile bicycle ride and nearly collapsed from exhaustion. That was when the heart arrhythmia was found.

Many years later, after I got off Prednisone, my blood pressure medications were stopped one by one because I was getting dizzy and light headed all the time. My cholesterol levels were being monitored because I was on Actemra. My rheumatologist became concerned that my cholesterol levels were too low so he stopped atorvastatin.

"Prednisone is incredibly effective in reining in inflammation but can also quickly and sometimes dramatically raise LDL levels and lower HDL levels. Studies suggest that high-dose prednisone can cause this in a matter of weeks and increase your systolic blood pressure at the same time"

This happened to my cholesterol levels after I was on moderately high doses of prednisone daily for PMR. It was all part of the increased risk of metabolic syndrome for people on Prednisone.

I think doctors are too proactive sometimes and prescribe "preventative medications" for known Prednisone side effects.

My cholesterol levels and blood pressure skyrocketed after PMR was diagnosed. I went from no cardiac history to 3 blood pressure medications and a statin soon followed. All these medications were started by a cardiologist when I suddenly developed a cardiac arrhythmia and left ventricular hypertrophy (LVH).

Until this time, I was riding my bicycle regularly and was very fit and trim --- all muscle and no fat. I loved to exercise. Prednisone made me the opposite. One of my first complaints after being on Prednisone for a year was "exercise intolerance." My primary care doctor ordered an exercise tolerance test but it was "normal." I maintained my exercise intolerance wasn't normal for me. A few months later I was out doing a 30 mile bicycle ride and nearly collapsed from exhaustion. That was when the heart arrhythmia was found.

Many years later, after I got off Prednisone, my blood pressure medications were stopped one by one because I was getting dizzy and light headed all the time. My cholesterol levels were being monitored because I was on Actemra. My rheumatologist became concerned that my cholesterol levels were too low so he stopped atorvastatin.

"Prednisone is incredibly effective in reining in inflammation but can also quickly and sometimes dramatically raise LDL levels and lower HDL levels. Studies suggest that high-dose prednisone can cause this in a matter of weeks and increase your systolic blood pressure at the same time"

This happened to my cholesterol levels after I was on moderately high doses of prednisone daily for PMR. It was all part of the increased risk of metabolic syndrome for people on Prednisone.

I think doctors are too proactive sometimes and prescribe "preventative medications" for known Prednisone side effects.

My cholesterol levels and blood pressure skyrocketed after PMR was diagnosed. I went from no cardiac history to 3 blood pressure medications and a statin soon followed. All these medications were started by a cardiologist when I suddenly developed a cardiac arrhythmia and left ventricular hypertrophy (LVH).

Until this time, I was riding my bicycle regularly and was very fit and trim --- all muscle and no fat. I loved to exercise. Prednisone made me the opposite. One of my first complaints after being on Prednisone for a year was "exercise intolerance." My primary care doctor ordered an exercise tolerance test but it was "normal." I maintained my exercise intolerance wasn't normal for me. A few months later I was out doing a 30 mile bicycle ride and nearly collapsed from exhaustion. That was when the heart arrhythmia was found.

Many years later, after I got off Prednisone, my blood pressure medications were stopped one by one because I was getting dizzy and light headed all the time. My cholesterol levels were being monitored because I was on Actemra. My rheumatologist became concerned that my cholesterol levels were too low so he stopped atorvastatin.

Well damn. Learned something new today! I have my own side effects from my statin but i didn’t know cold symptoms were among those documented.

@pb50

We wouldn't have unless he developed them. I am now doing research on any new drug they try giving to my husband - and myself in the future - to see what the potential side-effects are so we can be on the lookout for them. I do take a drug that I've taken for 40+ years that I need and can't stop, so that drug I never check side-effects because I don't want to freak myself out. I know there's a correlation between knowing a side-effect and experiencing them (because it's in your head - so I've read) yet under the current circumstances and with these serious drugs, I think we need to check them and be aware. Some of these drugs warn to tell your doctor right away when you experience one of the side-effects. I know with us we often wait things out hoping they'll improve. Well, we're no longer doing that and we inform the doctor of any side-effects my husband gets from prednisone, Actemra (so far we have not see any side-effects from Actemra!), statins, etc.

I have done so much research over this past year into my husband's medical conditions that while talking with my physical therapist yesterday, discussing some of the mishaps that happened with our former rheumatologist, he said he thinks I know more than many of the doctors do on these topics. Scary!! But having given it some deeper thought, there are so many diseases with so many different caviots, so many drugs, so many potential side-effects, I suppose they just can't know everything. Like I used to think they did. Now, I think it's up to us to follow-up with our own research and ask lots of questions. If a doctor is perturbed by your questions, seek a new doctor. His former rheumatologist basically made fun of me and told me she didn't need pictures I sent of my husband's swelling temples (I spent over an hour looking for old pictures to compare - since he always wears a cap, it wasn't easy to find). Yet his new rheumatologist, who we like better but who still is behind the times on some info re GCA, asked me to send pictures last week. It's awful to feel dismissed by a doctor. When a person does, I believe it's time to find someone new.

I never experienced being dismissed by a doctor except for one. My first rhematologist said I was "noncompliant." I said I was unable to do what she wanted me to do but that didn't make me noncompliant. I didn't seek another rheumatologist but a different one showed up at my next appointment ... I didn't know why and I never asked.

The new rheumatologist and I had a short discussion about starting over and working together. That was all that was needed and she was my rheumatologist for 12 years until I retired. I had to switch to another health care system so she couldn't be my rheumatologist anymore. I still have access to her via MyChart and she would still respond to any questions or concerns I have.

I'm currently being seen by doctors doing a Fellowship in Rheumatology. My former rheumatologist oversees the Fellowship Program so the doctors I see report to her.