Inclisiran Injections for Cholesterol

@betsya I understand your frustration, especially looking back at years when your LDL was so high. I’ve experienced some of that frustration myself.

My dad is 95 and also has familial hypercholesterolemia and elevated Lp(a). He tolerates Repatha well, while I couldn’t. Although my Lp(a) is low, I have other complexities in my medical history. It’s a reminder of how different our individual circumstances and responses to treatment can be, even within the same family.

I find encouragement in how much we’re learning about inherited cholesterol conditions and cardiovascular risk. Much of what we understand today wasn’t available to us years ago. There are still unanswered questions, but there are also more possibilities. I see a lot of strength in your persistence, the questions you’re asking, and the steps you’ve taken to understand your condition and find treatment that works for you.

Before suggesting something you may have already explored, I’m curious whether your lipid specialist or cardiologist has discussed how Leqvio fits into your overall treatment plan, particularly with your Lp(a) remaining elevated.

@tiburon for what it’s worth I’ve been wrestling with being approved for the use of Leqvio. It began with the ineptitude of my local cardiology dept. upon initial application for the drug they neglected to include information about not tolerating rosuvastatin, rapatha, praluent and back to rosuvastin plus zetia. The insurance company immediately denied the request because they thought I hadn’t tried any other statin/ PCSK 9 inhibitors. With the first appeal to the insurance company they denied it because i needed to provide 3 blood tests which indicated that my LDL was above their predetermined level. A quick note that my LDL level was at 53 because of the previous stain regimen I had been on but couldn’t tolerate. After these two “strikes” when using my cardiologist in my hometown I decided to have Mayo Clinic write an appeal being I had seen a statin intolerance cardiologist 6 months ago. It’s currently been about 60 days and no answer yet. I messaged Mayo and they said it can take from 60-90 days to get the appeals back.

I’ve become very frustrated with the process and still not feeling well! I will let you know what answer I get back when I get it. Good luck in your journey.

I have exact same experience. It's very frustrating to keep getting denials
I have no idea following second denial. What is the way to get it approved from somewhere as it is very expensive? Thank you

Key point: High cholesterol is a risk factor, not an immediate diagnosis of artery disease. In some individuals — regardless of race — cholesterol can be elevated without measurable arterial damage, especially if other cardiovascular risk factors are absent and lifestyle is healthy
Verywell Health

@tiburon I can understand your frustration. I’ve also been through the denial process with my insurance company, and I know how complicated it can become.

Did your insurance company explain the specific reason for the second denial? That may help clarify what options are available next.

They looked at LDL numbers and concluded. Everything is good. Do I have significant other metabolic issues, including severe muscle? Aches from status that they ignored

@lenmayo That is good advice. Sadly, only 20% of cholesterol comes from food. The rest is made by the body entirely separate from what we consume.

@ivannafeelgood
I love your screen name! Me too! Leqvio is giving me a lot of joint pain and stiffness. I’m due for the 2nd shot in 3 weeks. Worried the side effects may double down. Will know in a couple weeks if it’s effective in lowering my LDL. If yes then I’ll go for the next shot.

@lenmayo and @ivannafeelgood, your comments about diet caught my attention because they connect with something I’ve been learning through my own experience with Leqvio.

When I started LDL apheresis for familial hypercholesterolemia, I was told to eat what I wanted. Diet alone wasn’t going to adequately control my extremely high LDL cholesterol. I’ve wondered whether that advice was also meant to relieve some of the stress of trying so hard to control something I couldn’t manage through diet alone.

I’ve been taking Leqvio for several years, along with ezetimibe (Zetia). They work in different ways to lower LDL, and the combination has worked very well for me. It’s helped me appreciate how different approaches can complement one another.

Now that my cholesterol is finally well managed, I’m discovering that improving how my body functions is another part of the journey. After years of managing extremely high cholesterol and complex treatments, better LDL numbers don’t automatically mean better day-to-day functioning. I’m learning that restoring function takes time, as I gradually build strength, improve activity tolerance, and discover how my body responds to activity and recovery. Controlling my cholesterol has given me an opportunity to work toward those improvements.

I’m learning to reduce the unnecessary noise and demands on my body, so the treatments and healthy activities I use have the best opportunity to help me function well.

@dec2022, your question about how people are doing with Leqvio has brought out several different experiences, from LDL results and side effects to accessing treatment. I’m curious how others see these pieces fitting together. Beyond LDL numbers, what has influenced how you’re doing with Leqvio overall?

@jlharsh so glad to hear you've gotten your LDL under control and can focus on function, strength, and tolerance. I am not as far along in my journey. My doctor recently confirmed I have statin intolerance that developed after nearly 30 years on Rosuvastatin with no issues followed by debilitating bilateral pain, stiffness and weakness in both arms, legs, and hands, and back for 3-4 months. This all emerged shortly after a successful TKR. I never suspected my statin, but I have a great doc and he figured it out. Two weeks after I went off the statin I was pain free for the first time in months. My LDL shot up, so my doctor put me on Pravastatin. 2.5 weeks later I was back to the same horrible pain, weakness, and stiffness. Doc wants me to start Repatha, but it is very expensive and not covered by my Medicare part D. I'm hoping he'll consider Leqvio, and hoping that it won't cause me what I've been suffering on statins.