Started Repatha - Side Effects

Well, I laid off of it for what I am thinking was 3 months then tried Praluent. The first try took me right back to where I had left off with Repatha so I did not take more. I started lipid apheresis 1/2019 that would acutely drop LDL to a good place every other week. My overall health declined and I was looking anywhere for help. At the same time inclisiran was coming out but I was told it worked the same way as Repatha and Praluent. I eventually made it to a new doc managing my cholesterol and learned I could expect inclisiran to work differently. I have had 4 shots and doing well.

I'm approaching 6 months on Repatha with no side effects.

I saw something about the trials but have not seen enough on it to have an opinion.

Here's another way to look at this: we're all test subjects right now and it will take many years to know the long term effects from these new drugs. Around 20+ years ago, I was in the original niacin trial. Niacin raises HDL and lowers LDL; has to be good, right? We took 3000 mg daily of Niaspan, and after the trial, I took this for years. Just a few years ago, my doctor abruptly stopped me from taking it as it's now known that the long term effects are an increase in cardiovascular events, even though the HDL and LDL numbers looked better. Something else was going on.

Repatha has lowered my LDL to 27 (from 109) and my Lipoprotein B from 125 to 40, so short term, looks good. I'm hoping my taking this helps my kids, as they both have the inherited high cholesterol gene, and medicine will learn more as we go forward.

How long have you been on this drug and are you still symptom free? Also, it says it should be taken with a statin. Since I can’t take statins or Repatha, I wonder if it will work alone? Here are the side effects which sound like statin side effects: The most common side effect of LEQVIO is injection site reaction (including pain, redness, and rash), which occurred in 8% of people taking LEQVIO vs 2% with placebo. Other side effects people reported with LEQVIO included joint pain (5% vs 4% with placebo) and chest cold (4% vs 3% with placebo).

I am so interested and want to know more from people like you that can’t take statins or Repatha.

My cardiologist actually told me my PCP said he was concerned I would be non compliant with statin therapy because I didn’t like how it made me feel. PCP was the one who initially called in a statin based on my annual blood test without even discussing it with me. So yes, I refused to take it until I consulted with a cardiologist. Multiple tests later - I passed every single one with a calcium score of 0 - the cardiologist told me I still needed my numbers lower. So frustrating!

I have had 4 injections of Inclisiran so almost 2 years. The 2nd injection is 3 months following the first, then 6 months apart after that. I imagine it works on its own, maybe not quite as well? The information we read is based on the studies they’ve done, and I don’t think it’s been studied by itself. A good doc should know the answer to this question. As far as side effects, I have learned that some are actually things patients reported but may be part of the body adjusting to the drug in an expected, good way. If you think about it, every drug you take goes through your entire body. If you do something to make the body change how it works, it does just that. It works differently. I was told 10 years ago (at Mayo) when I was on this path of trying cholesterol drugs…there are 3 possible outcomes: net positive, net neutral, net negative. Certainly we want to avoid negative where the impact to the body is worse than the good the drug will do. To me, the other two is where “the art of medicine” comes in.

I can only tell you what I have done, what has worked for me and what has not. It truly does all come down to deciding what you want to accomplish. My cholesterol is better today than it ever has been. I am feeling better and better. I am taking drugs that have previously caused me problems. So, was this the drug, my body, or how the drug was being used? It has come about through an intentional process of figuring “me” out and digging beyond a simple LDL marker. What I do know is that I am not a trained doctor and I do not understand the drugs. I’m not sure all doctors can. Step #1 is to have a doctor you trust, then #2 help you pin down what your risk is. Once you can sorta quantify your risk you will know what you are trying to accomplish. Do you need Repatha or a statin?

I am focused to stay on a path I know is a net positive. This creates a lot of noise around me by other people, consequently a different type of stress. It is completely isolating at times when their bias takes over. This gets off our topic of statins but I truly believe you have to figure out what you want and that will help you figure out the rest. You have done such a good job of managing all this. Is your piece missing to find a medical person to tie it all together (or untie it?) Maybe you have recommendations for me.

I have had 4 injections of Inclisiran so almost 2 years. The 2nd injection is 3 months following the first, then 6 months apart after that. I imagine it works on its own, maybe not quite as well? The information we read is based on the studies they’ve done, and I don’t think it’s been studied by itself. A good doc should know the answer to this question. As far as side effects, I have learned that some are actually things patients reported but may be part of the body adjusting to the drug in an expected, good way. If you think about it, every drug you take goes through your entire body. If you do something to make the body change how it works, it does just that. It works differently. I was told 10 years ago (at Mayo) when I was on this path of trying cholesterol drugs…there are 3 possible outcomes: net positive, net neutral, net negative. Certainly we want to avoid negative where the impact to the body is worse than the good the drug will do. To me, the other two is where “the art of medicine” comes in.

I can only tell you what I have done, what has worked for me and what has not. It truly does all come down to deciding what you want to accomplish. My cholesterol is better today than it ever has been. I am feeling better and better. I am taking drugs that have previously caused me problems. So, was this the drug, my body, or how the drug was being used? It has come about through an intentional process of figuring “me” out and digging beyond a simple LDL marker. What I do know is that I am not a trained doctor and I do not understand the drugs. I’m not sure all doctors can. Step #1 is to have a doctor you trust, then #2 help you pin down what your risk is. Once you can sorta quantify your risk you will know what you are trying to accomplish. Do you need Repatha or a statin?

I am focused to stay on a path I know is a net positive. This creates a lot of noise around me by other people, consequently a different type of stress. It is completely isolating at times when their bias takes over. This gets off our topic of statins but I truly believe you have to figure out what you want and that will help you figure out the rest. You have done such a good job of managing all this. Is your piece missing to find a medical person to tie it all together (or untie it?) Maybe you have recommendations for me.

I have had 4 injections of Inclisiran so almost 2 years. The 2nd injection is 3 months following the first, then 6 months apart after that. I imagine it works on its own, maybe not quite as well? The information we read is based on the studies they’ve done, and I don’t think it’s been studied by itself. A good doc should know the answer to this question. As far as side effects, I have learned that some are actually things patients reported but may be part of the body adjusting to the drug in an expected, good way. If you think about it, every drug you take goes through your entire body. If you do something to make the body change how it works, it does just that. It works differently. I was told 10 years ago (at Mayo) when I was on this path of trying cholesterol drugs…there are 3 possible outcomes: net positive, net neutral, net negative. Certainly we want to avoid negative where the impact to the body is worse than the good the drug will do. To me, the other two is where “the art of medicine” comes in.

I can only tell you what I have done, what has worked for me and what has not. It truly does all come down to deciding what you want to accomplish. My cholesterol is better today than it ever has been. I am feeling better and better. I am taking drugs that have previously caused me problems. So, was this the drug, my body, or how the drug was being used? It has come about through an intentional process of figuring “me” out and digging beyond a simple LDL marker. What I do know is that I am not a trained doctor and I do not understand the drugs. I’m not sure all doctors can. Step #1 is to have a doctor you trust, then #2 help you pin down what your risk is. Once you can sorta quantify your risk you will know what you are trying to accomplish. Do you need Repatha or a statin?

I am focused to stay on a path I know is a net positive. This creates a lot of noise around me by other people, consequently a different type of stress. It is completely isolating at times when their bias takes over. This gets off our topic of statins but I truly believe you have to figure out what you want and that will help you figure out the rest. You have done such a good job of managing all this. Is your piece missing to find a medical person to tie it all together (or untie it?) Maybe you have recommendations for me.

I don’t know how old you are, but it seems strange that you would have a calcium score of zero, if you are older, middle-aged, or above! I don’t think I have met anyone with the score of zero unless they were an infant or child. Congratulations. If so, that’s very good news.

I absolutely loved your post, and it was so accurate and exactly where I am with my doctors! I need somebody to try in my dysfunctional thyroid, the calcium in my arteries, and all of my medication‘s! Thank you so much for posting I would love to add you to my team

After MANY years of trying to take statins and Repatha, I have concluded that I would rather die sooner than live with the extreme side effects. Right now I’m not on any heart disease prescriptions. That’s why I asked about whether Inclisiran will act alone as I would not be able to take statins or Repatha with it. I was hoping it was something different I could try. I just started taking OTC Beta-Sitisterol Plant Sterols. My cholesterol and LP(a) are high. My “good” cholesterol is also high and triglycerides are normal, however, my latest calcium scan has elevated.