Started Repatha - Side Effects

@johnjtgg please keep us informed. I will report here if my numbers are improved by the Terzepitide I’m on now.

@johnjtgg Thanks for letting us know. I’m with you on quality of life. I have to wait 2 more months to get all the Repatha out of my system. Then I see the cardiologist although they have already okayed getting off of it. I feel a bit like a ticking time bomb, but back to all my athletic activities with vigor. I like Michael Gregor MD ‘s work, although my vegan diet doesn’t lower my LDL that much.And a big part of my issue is very high lipoprotein (a).He has a new little book out on the subject. I am interested in Inclisiran. Good luck to you and keep us posted.

@backhand me, too. My ratio is 3.5, not bad, it’s the LPa.

I started Repatha at the end of September. After my first dose the only side effect I noticed was some diarrhea for a few days, not a common effect but noted by others. By my 3rd shot I noticed some back pain and I felt short of breath, I didn’t attribute to Repatha, thought maybe due to change in season, I do have asthma but seasonal changes aren’t usually something that causes any problems. Shot #4 solidified my concern that it was Repatha, I’ve had to use my rescue inhaler several times a day (I’ve only used it 3x’s in past 2 years) so I contacted my Dr. and they said to discontinue next 2 scheduled doses to see if issue resolves.

I’m glad you are proactive.

This entire subject is bewildering, not to mention frustrating. So many different physiologies/metabolisms. These placebo base trials so it seems doesn't cover the entire spectrum or the numbers are intentionally flawed. It's becoming more and more apparent you can either tolerate Evolocumab/Repatha or you can't. This doesn't mean it doesn't eventually rear its evil head...

@llynch17056
I am glad if that helps. Consipation is already a serious problem for me, so if I try it I will have to pay attention.

Newbie here and hope I'm doing this right. Family history of heart disease, both sides. Father died suddenly at 53. In 2022 I was diagnosed with an aortic aneurysm and had the Bentall procedure at Cleveland Clinic, Weston; I have a prosthetic valve. Surgery was successful. I was 62 at the time and am 66 now. Male.

Docs want my LDL to be as low as possible, with 50 target.

I was put on Lipitor years ago, maybe mid-2000s, started at 20mg and didn't have any issues. Eventually bumped up to 40mg, and then in 2023, it was bumped to 80mg, max dosage, I'm told. Ezetimibe also added.

I seemed to be tolerating it and LDL went to 51. About a year ago, I started having severe muscle stiffness. Went to an urgent care because I could barely walk. The effect was like when you have a back spasm, except my back hadn't spasmed.

I am in a different city/state now from where I had surgery. I had a few more bad days where I could barely walk. Was taken off Lipitor for a statin break for a couple months; LDL went up to 132 (196 total chol.) Put on Crestor, and three weeks in was one of the worst points. I have some longtime myofascal restrictions, so I'd have occasional trigger point pain, but what I was experiencing was just this terrible stiffness, affecting my mobility and range of motion.

Taken off Crestor and put on Nexletol, plus the Zetia. By June LDL was only down to 114 (175 total chol.) so started Repatha Aug. 4, twice-monthly SureClick injections. End of September, so two months in, LDL was 91 (160 total). Seemed to be tolerating it OK.

Now I am having almost debilitating stiffness, some pain, random joint and back pain. Because it was so like when I was on statins, wondered if it is not the Repatha. My PCP said he was OK with me going off it for a month. I've read that it takes 60–90 days to leave your system.

I feel absolutely wretched. PCP is out of town. Messaged cardiologist and told him what is going on, that I suspect I'm not tolerating Repatha. He wrote:

"The mechanism of Repatha does not involve any sort of action on the musculoskeletal system. I would recommend you follow-up with PCP to look for other causes of this musculoskeletal complaint besides this medication.

Also, Repatha leaves the system and is cleared out after about 36 hours. Repatha any of its effects would be cleared out of your system after about 30 to 40 days, so the timeline is unlikely to match up with your symptoms."

I have really liked my cardiologist, but the info in his message doesn't align with what I have read (and I can't make sense of the second paragraph). I don't know what to do. Apologies for the long post, and TIA for any thoughts.

God bless you. It’s not your imagination. My cardiologist was amazingly unaware of the symptoms (just as you described them) caused to some by all the medications you mentioned, including Repatha. When I couldn’t get out of bed (and I am a very active person) I had to stop the Repatha. My cardiologist blew me off. Some people have no side effects, others, like you and I, have debilitating side effects. My cardiologist seemed to think I was either faking the side effects or exaggerating them. His attitude was to take these medications no matter how sick they made me. It took much longer for the Repatha symptoms to leave my body than it took the various statins. I ultimately decided that I would rather live a shorter life and be happy and active than to live bed bound by a drug. And, I was concerned about what I was putting my body through each time I tried another one. Right now I am on Terzepitide with no side effects. (It is not a statin). It has potential to lower LPL. I will test again in a couple of months (after 6 months on it). I am going to report back here. At this point in my life I am skeptical about the numbers obsession especially when the “cure” for high numbers are drugs that make me sick. I’m old enough to have witnessed drugs come and go, one day they are miracle makers and the next they will kill you (statins feel like killers). My internist told me to quit worrying about it. He said I’m active, eat healthy and I’m enjoying my life. He also points to my 3.5 ratio.

@llynch17056 Thank you for the reply. I have read your previous posts as well. I'm just at a loss. Due for 9th injection today, but I'm not going to do it. I was really surprised by my cardiologist's response; even my PCP said Repatha could cause muscle problems, but not as bad as statins, whereas, cardiologist is saying there's no connection. He is in a reputable group, and as I said, I have really liked him. I am thinking I need a second opinion (from another cardiologist) if he insists I continue to take Repatha (which, right now, I'm thinking I'm not going to).

To be honest, I am quite dejected about it. Thank you for your kind response.