Inclisiran Injections for Cholesterol

dec, I'm not qualified to answer, as I'm avoiding incliseran after an unpleasant relationship with Repatha. I've decided to try the newest the pill form enlicitide--Lipfendra, but I'm not in a hurry.
I hope you have good luck.

@dec2022 I’ve been receiving inclisiran (Leqvio) injections for several years and am getting ready for what I believe will be my eighth injection in a couple of weeks.

I’ve struggled with extremely high cholesterol my entire life and have tried just about everything!

@gently I can relate to your experience with Repatha. I had problems with it, too.

Leqvio has made an enormous difference for me. For the first time in my life, I’ve been able to get my LDL cholesterol under control. Even more significantly, I was able to discontinue LDL apheresis, a procedure I had been told I’d need every two weeks for the rest of my life. It’s a process that removes LDL cholesterol from the blood, somewhat like dialysis.

That’s been life-changing for me.

Of course, everyone’s experience with medication is different. @dec2022, are you considering starting Leqvio, or have you already begun receiving injections?

I appreciate your encouragement Janell. I thought that my experience with Repatha might be repeated with Leqvio. And it may be the same with Lipfendra.
It's easy to ignore those LDLs until they strangle your arteries.

@gently, you are kind to say that. Your comment reminded me of something important I learned along the way!

I certainly understand what it's like to have reservations! I had a difficult experience with Repatha, too, and initially ruled out Leqvio because I was told it worked the same way.

What I later learned made a difference. Both treatments target PCSK9, but Repatha blocks the protein after it’s produced, while Leqvio works inside liver cells to reduce its production.

That doesn’t guarantee a different experience with side effects, but it helped me understand why Leqvio might still be worth discussing with my care team.

For me, it’s been a game changer. I wouldn’t be where I am today without it, and I’m grateful I reconsidered! ❤️

The American Heart Association has a helpful overview of cholesterol medications, including how different treatments work:
https://www.heart.org/en/health-topics/cholesterol/prevention-and-treatment-of-high-cholesterol-hyperlipidemia/cholesterol-medications

I appreciate experiences with PCSK 9.
May be someone can suggest to get inclsiran as my health insurance has denied pre authentication and appealing their decision has been denied coverage for inclisiran.
Out of pocket is very expensive.
Any suggestions appreciated.
Thanks

Just watch your diet and the animal fats!!!

@jlharsh Why are you receiving LDL apheresis? I have very high Lp(a), around 600 nmol/L, and despite taking Leqvio and 20 mg of Crestor, my Lp(a) is still 472 nmol/L. It seems like nothing is bringing it down significantly.

I’m wondering why none of my doctors have ever mentioned LDL apheresis as an option. With my Lp(a) still so high, I’m curious whether it might be something I should consider. Have you found it helpful, and what made you decide to pursue it?

@betsya I began LDL apheresis because I have familial hypercholesterolemia (FH), a genetic condition that causes very high LDL cholesterol. At the time, I had exhausted the medication options available to me, and my LDL remained inadequately controlled.

Apheresis reduced my LDL by approximately 70% with each treatment, but the reduction was temporary. My LDL would rebound before the next treatment, so I needed apheresis every two weeks.

When Leqvio eventually controlled my LDL well enough that I could discontinue apheresis, it was life-changing for me!

My situation is different from yours because my Lp(a) has always been low. I noticed, though, that your Lp(a) has decreased from approximately 600 to 472 nmol/L, a reduction of about 21%. That’s interesting because studies of inclisiran have reported average Lp(a) reductions of roughly 20–25%. Of course, we can’t know from those numbers alone how much of your reduction is attributable to Leqvio.

You bring up a good point, questioning why apheresis hasn’t been discussed as an option for you. It does come with its own set of considerations if you find it is an option. How have your doctors explained the treatment plan for managing your elevated Lp(a), especially since you’re already taking Leqvio and Crestor?

@tiburon I’m sorry you’ve encountered so many obstacles trying to get Leqvio covered, especially after an unsuccessful appeal.

I have a few thoughts that might be helpful, but before suggesting another avenue you’ve possibly already explored, I’m wondering what you’ve been told about the reason for the denial and whether your prescribing clinician has experience navigating insurance approval for Leqvio.

One thing I’ve learned is that Leqvio is a little different from medications picked up at the pharmacy. Because it’s administered by a healthcare professional, it’s often covered under the medical insurance benefit rather than the prescription drug benefit, although plans vary.

@dlkreps, you’ve also been working through insurance coverage for Leqvio. Would you be willing to share what you’ve learned from your experience?

@jlharshLeqvio did bring my Lp(a) down, and I was also on Repatha, but I had side effects and had to stop taking it. Both medications lowered my Lp(a), but when your starting number is around 600 nmol/L and it only comes down to 472, how much of a difference does that really make? My understanding is that an ideal level would be much lower, around 75 nmol/L.

I also have familial hypercholesterolemia. For years, doctors told me not to worry because my HDL was high, even though my LDL was consistently over 190. Looking back, I’m frustrated that my cholesterol was dismissed for so long. Now I’m trying to understand what more I can do to reduce my cardiovascular risk, especially with my Lp(a) still so high.

My mother also has very high Lp(a) and LDL, as do many other members of my family. The one thing I hold on to is that my mother is 88 years old and still healthy. It gives me hope that having these high numbers doesn't automatically mean I'll develop heart disease.

Thank you for your answer!