How low do side effect for Leqvio/Incliseran last?

Repatha worked less than typical for me and I could not tolerate it. I have been on Leqvio for 2 1/2 years now.

It is interesting you mention taking Repatha for 4 months. I felt horrible following injection #9 and discontinued.

Leqvio (Inclisiran) has worked to reduce my LDL. I did have a rough night of all over pain following, the most severe with the first injection then lessening with each of the next couple. Then, nothing. Eventually, I felt wonderful for a couple days following.

I had a conversation with my pharmacist who told me Leqvio stays in your system a couple days. It may be helpful to talk to yours. What are your doctor’s thoughts?

My doctor understands my fears. I had a stroke a year ago. My left leg is spastic. I have botox injections to stop the spasms. But there was no stopping the spasms and pain with Repatha. She leaves it to my choice. I am considering taking hallf the dose first, if this is possible.

excuse my english. I'm Dutch, so not a native speaker.

@anyasmits, you are perfectly clear! Please let me know if I am not because I have your same concern with our communication.

I completely understand your fear. While I have not had an event (heart attack or stroke) I have had super high cholesterol all my life. I have tried darn near everything and it either didn’t work well and/or caused side effects I couldn’t tolerate. It wasn’t until I found a doctor that understands this well who worked through getting me on Leqvio that my numbers got into a good range.

I want to introduce you to @dlkreps who may have helpful information from personal experience.

You mention being Dutch. Where do you live?

@jlharsh I live in Hengelo, near the German border.

@anyasmits I’m sorry to hear of the troubles you’re experiencing due to statin intolerance.
My experience began after stent placed in LAD. I was prescribed 20mg of rosuvastatin which I took for 6 weeks. I tried to be a “good” patient and not complain about the muscles weakness and pain thinking it would go away. After 6 weeks I decided to mention it to my Dr. I was then prescribed praluent without allowing the rosuvastatin to dissipate from my system. I was on that for 4 weeks with similar problems. They then prescribed me rapatha right away without eliminating the praluent from my system. I took that for another 4 weeks and had to quit. My cardiologist then went to 5 mg of rosuvastatin and 10 of ezetimibe . I’ve been on this current combo with mixed results. My cardiologist suggested I stay on them for another 3 months on my annual check-up. I decided I was done being a human guinea pig and scheduled an appt at Mayo cardiology. A week ago I met with a Dr Kolpecky who deals with statin intolerance . He did thorough tests and came up with what I consider a good game plan. I’m off the rosuvastatin and zetia for one month to clear my system. After a month I will start the rosuvastatin and take that for a month. If I don’t have any adverse affects I will restart the zetia in 1-2 months after that. If I have issues with either one I will receive shots of inclisirin 284mg every 6 months. I hope you can find a cardiologist that will treat you as a human being rather than another number. From reading this forum and my experience with a number of cardiologists I feel like they’re in denial about the side affects of statins and that it’s all in your head. Don’t settle for this kind of treatment. Keep asking and keep searching for the treatment you deserve.

@dlkreps

Thank you for your thorough reply. This info helps.

@jlharsh I'm surprised to hear that Leqvio only stays in your system for a couple of days. My understanding is that the meds continue working for up to 6 months at a time, thus the need for 2 injections per year. My cardio suggested Leqvio for me and due to my concerns of unknown, adverse side effects remaining in my system until the time elapsed, I decided to stay on crestor.
Thoughts?

It stays in your system for a few days but it affects the liver blocking the making of PCSK9 witch increases de LDL levels in your blood. After 6 months your liver stops doing that. I'm concerned that that proces itself is responsable for the side effects. Not Leqvio itself. I understand spasms and musclepain can last a long time. This could be due to a lack of PCSK9.

I would like to pass on my experience with the Leqvio injection. In August of 2023 I received my first injection. I had familial high cholesterol all my adult life. My cardiologist suggested the Leqvio because I had muscle and joint pain with statins. I reluctantly agreed to try. I do have osteoarthritis in my knees and I have occasional lower back pain because of spinal issues but nothing serious. After 2 other injections, I did notice several problems, such as, minor UTI's, a resurgence of my acid reflux which I've had under control for 15 years. Also joint and muscle pain which I attributed to arthritis. Then after my injection in October of 2024 my sciatica flared; I was unable to sleep more than 2 hours at a time. So I was always tired, plus now I was in constant pain or having leg cramps. I even stopped driving for fear of getting a leg cramp. I was also unable to sit or stand for more than 10 or 15 minutes at a time, I was also using a cane to help me walk. The family doctor sent me for several tests, especially since I already had edema in my legs. All my bloodwork and test results were good; no signs of any problems. I had an endoscopy which simply said I had inflammation, but why? I also went to a rheumatologist who did many blood tests, especially for autoimmune diseases. Again everything came out good. I then had pain first in my right wrist, then in my left. The orthopedist diagnosed me with tenosynovitis of dequervains. I received a cortisone injection in each wrist; I am still having pain in my wrists. My next doctor was a spinal surgeon who sent me for an MRI which showed issues which I already knew about. He suggested PT which I did twice weekly for 3 months. This helped, but I still had the intense pain. My next step was going to be a neurologist. At that time I ran out of my B12 supplement and decided to research different brands. I came across an article on the Mayo Clinic website where they were talking about Thorne vitamins and supplements. So I decided to give them a try. After day one of my first 1000mg B12 I noticed a difference; by day three my intense pain had not only diminished, but disappeared. I still have some pain, but it's very manageable without the Tylenol that I needed daily before. I am continuing my exercises from PT in the hopes that I can be totally pain free eventually. It hasn't been a good two years of this journey from the Leqvio injection. Yes my cholesterol dropped to low levels, but the other issues far surpassed those results. This journey has been mine; you might not have some or any of these problems. My problem has also been that the cardiologist didn't really believe me; that's why I went to so many different doctors looking for an answer and help.

@nancym7 Did you eventually stop the leqvio? and or replace it with another statin?