Started Repatha - Side Effects

Thanks for your comment. I had the same experience! I was on a fairly low dose of atorvastatin for about ten years. I felt as normal as when I was twenty years old, and I had no problems exercising or running. However, my LDL was high (so was my HDL, which is a good thing, thanks in part to fish oil). I developed severe hypertension (excessively high blood pressure), a calcium score of 190, and an enlarged lower left atrium (heart). I was put on a high dose statin (rosuvastatin), plus amLODipine. My ankles swelled painfully, and the myalgia got so great that I couldn't walk more than a thousand feet without severe pain. I switched cardiologists (from the one that insisted that I stay on high dose statin) and went to Mayo Clinic in Arizona. Now I'm on praluent (similar to Repatha) and a low dose of a beta blocker (Carvedilol), and I feel normal again, with almost all of my myalgia now gone. Although my insurance wouldn't cover Repatha, it did fortunately cover Praluent. Sometimes there is still some pain (it might be from prior damage) if I sit the wrong way for too long. LDL is now down to almost normal, but still a little elevated. I'm trying to lose 10 lbs. with exercise to get LDL down more naturally, but it's a real challenge. Otherwise, Mayo Clinic says I might need to raise dose of Praluent from 75mg/ml every two weeks. I'm reluctant to do anything that would bring back the severe myalgia. I suspect my long -erm health will benefit more from more exercise than being crippled up with more medications. I hope my story so far is helpful to others and I'd be interested in hearing more experiences from you and others.

Thanks for your comment. I had the same experience! I was on a fairly low dose of atorvastatin for about ten years. I felt as normal as when I was twenty years old, and I had no problems exercising or running. However, my LDL was high (so was my HDL, which is a good thing, thanks in part to fish oil). I developed severe hypertension (excessively high blood pressure), a calcium score of 190, and an enlarged lower left atrium (heart). I was put on a high dose statin (rosuvastatin), plus amLODipine. My ankles swelled painfully, and the myalgia got so great that I couldn't walk more than a thousand feet without severe pain. I switched cardiologists (from the one that insisted that I stay on high dose statin) and went to Mayo Clinic in Arizona. Now I'm on praluent (similar to Repatha) and a low dose of a beta blocker (Carvedilol), and I feel normal again, with almost all of my myalgia now gone. Although my insurance wouldn't cover Repatha, it did fortunately cover Praluent. Sometimes there is still some pain (it might be from prior damage) if I sit the wrong way for too long. LDL is now down to almost normal, but still a little elevated. I'm trying to lose 10 lbs. with exercise to get LDL down more naturally, but it's a real challenge. Otherwise, Mayo Clinic says I might need to raise dose of Praluent from 75mg/ml every two weeks. I'm reluctant to do anything that would bring back the severe myalgia. I suspect my long -erm health will benefit more from more exercise than being crippled up with more medications. I hope my story so far is helpful to others and I'd be interested in hearing more experiences from you and others.

Hi @dcody.
Your summary is helpful, thank you. I am a Mayo MN cardiology patient. My cholesterol has never been well controlled, and I have just felt worse and worse over time. My ears perked to this discussion because Repatha did not work for me. I started feeling worse and worse as I was on it and my LDL did not drop as much as expected. Inclisiran is part of what is working for me now. Mayo Clinic has figured out more of what is unique to me. With that knowledge, I am now taking drugs again that I said “never again” to because of how I felt. Switching from a “spray and pray” approach to treating what our doctors understand is happening seems to be what is working. I appreciate reading your story.

An initial question for you…why a beta blocker?

I’m so happy for you. It seems I get the worst of the side effects with all those drugs. Inclisiran Sounds interesting, but with injections only twice a year I would be afraid I’d get the side effects (listed side effects sound like statins and Repatha) but it would then be in my system for 6 months. I have come back from statins and Repatha making me practically disabled. But, it sounds interesting.

Aww, thank you! I am pretty excited about all of it.

I had that same concern. I have learned inclisiran works totally different than any other treatment available. My experience has been totally different as well. I did ask ask my pharmacist about it before starting, and he told me it only stays in your system a couple days.

Wow. You only get a shot twice a year but it only stays in your system a couple of days??

Crazy, right? That is correct. It is a messenger RNA (mRNA) injection. I understand this to mean it sends instructions to the body letting it know how to take care of the problem itself. It is a targeted treatment.

Hi @dcody.
Your summary is helpful, thank you. I am a Mayo MN cardiology patient. My cholesterol has never been well controlled, and I have just felt worse and worse over time. My ears perked to this discussion because Repatha did not work for me. I started feeling worse and worse as I was on it and my LDL did not drop as much as expected. Inclisiran is part of what is working for me now. Mayo Clinic has figured out more of what is unique to me. With that knowledge, I am now taking drugs again that I said “never again” to because of how I felt. Switching from a “spray and pray” approach to treating what our doctors understand is happening seems to be what is working. I appreciate reading your story.

An initial question for you…why a beta blocker?

I was told at the Mayo Clinic that a beta blocker, specifically Carvedilol, is just as effective and works just as well (apparently, for most people as well as for me) as a calcium channel blocker, specifically Amlodipine, at lowering blood pressure. They prescribe either or, or both. My brother, who is seven years older, has used both for quite a while. Switching was a no-brainer for me. I was having swelling and skin discoloration problems in my ankles, and sometimes feet and calves, while taking Amlodipine. In addition to Losartan, so far it has been more effective than Amlodipine, keeping my blood pressure below 130/80 most of the time, with sometimes as low as 110/60 and sometimes a few brief peaks to the 135/80 area. Very importantly, unlike Amlodipine, I've noticed no side effects from Carvedilol 6.25 mg twice a day. The praluent has also significantly diminished myalgia from the days of taking statin drugs as well, so now I'm back to feeling my younger self again. Of course, only time will tell how effective this will be. Hopefully, for years. I'm walking three to five days a week and hoping to lose about ten pounds to help keep metabolic and cholesterol conditions in check. It's my belief that the more natural health and fitness solutions I can find, the better it has been than taking more medications each with it's potential side effects and drug interactions. I think it's too easy for the average doctor or cardiologist to prescribe standard therapies when patients are disinclined or unable to change eating and exercise habits which would actually provide better life quality and a longer healthspan for most people.