How low do side effect for Leqvio/Incliseran last?
Hi. I tried Rephata for 4 month with severy adverse effects. Stomach, UTI, severe mussle pain and spasms thar lasted for hours. I quit.
I'm advised to try Leqvio now, but very affraid of the adverse effects, even though it works different then Repatha.
Has anyone experience with the side effects en how long they last?
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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?
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1 ReactionMy 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.
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2 Reactions@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?
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3 Reactions@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.
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1 Reaction@dlkreps
Thank you for your thorough reply. This info helps.
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1 Reaction@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?
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1 ReactionIt 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.