Elevated Lp(a) levels - does Repatha help?

Is a KETO diet OK for those with a high LPA ? Mine is 235

@astohrer

Hi there! I’m new here & I’ll be starting my first dosage of Repatha tomorrow.
My question for you is, how high is your LP (a) & LDL Particle?

I cut myself off before I was finished haha!

My LP (a) is >600 (they’ve said my number is so high, & I have so much in my bloodstream, that my number is actually undectable.

My LDL Particle is 1731

My next question for you is, if you’ve been on Repatha for that long, why aren’t they having you do Lipoprotein
Apheresis?

Again, I’m just asking questions to learn. I am VERY NEW to all of this. My Mom & Brother died from this, within a 6 week period of time & I’ve been diagnosed. I am 54.

My Cardiologist just started me on Repatha. I am in California

@betsya

Hello. I am very new here! I found out I have high LP (a), after loosing my Mom & younger Brother (lost them 6 weeks apart & my Brother just suddenly didn’t wake up). Both death certificates showed excessive play throughout their bodies.

My LP (a) was over 600 (all 3 of my Drs also, about fell out of their chairs lol), and said the amount of LP (a) in my blood was undetectable levels. My LDL Particles was 1731, all my other labs that went along w these labs, were also very high & the ones you didn’t want to have were exactly the ones flagged.

I’m on a statin plus 2 other cholesterol meds & I’ll be starting Repatha tomorrow.

I am 54

Any suggestions for me?

@bobinindiana

Hi there! I am just curious what the “qualifications” were, why were you not a candidate?

Sorry, I am extremely new to all of this & am trying to learn as much as I can. I feel I learn most from forums like this.

Also, Clinical trials offer these transfusions?

@jlharsh
Hello! Jw, how long have you been doing the Lipoprotein
Apheresis?

Did you start that because nothing else was lowering your levels?

@tamig I just wanted to share what has helped me, because when I first got my numbers back it felt scary and overwhelming. My numbers were bad at first too, so I understand how it can feel.

The first thing I did was change my diet. I was never really a big alcohol drinker, but I had a serious sugar habit. I cut out sugar and stopped eating red meat and switched mostly to a plant-based diet, including plant-based protein powder. I do still eat things like canned tuna (without mayo).

One of my regular meals is a cup of egg whites plus one egg white from a whole egg with a cup of spinach cooked in avocado oil. If you want, I’m happy to share the rest of what I usually eat during the day.

Those changes really helped bring my numbers down, along with medication. I take 20 mg of Crestor. I was on Repatha for a while, but it made my glands swell, so now I’ve switched to Leqvio. I’ve only had my first shot so I don’t know yet how it will work for me.

My A1C was 5.8 and after cutting out sugar it dropped to 5.6. My ApoB was very high and now it’s in the normal range.

One thing that really helped my peace of mind was getting a CT angiogram of my heart. It showed mild mixed plaque in the LAD but no major blockage. Just knowing where I stood made me feel more in control.

I also found out I have sleep apnea and now use a CPAP. Sleep apnea can affect the heart too, so treating that was important.

Now I focus on staying active. I hike regularly and try to get my heart rate up.

I just want you to know that things really can improve. There are many tools—diet, medication, sleep, and exercise—and you don’t have to do everything at once. Small changes can make a big difference.

@betsya
Hi, thank you SO MUCH for responding back to me!

Yes, I just saw my 1st Cardiologist on Friday & it seems today I’m quite overwhelmed & realizing I’m going to need to make MAJOR lifestyle changes. But where to start! Haha!
Feel free to send me what you eat! I appreciate ANY & ALL advice & im GRATEFUL!

Im noticing a pattern with Lipoprotein a & the LAD artery, is that the most common area? “So far” on my 1st Calcium Scan (last year), that’s where ALL of mine was (no where else). My Cardiologist is having me do another one, he wants to see how quickly I’m Calcifying.

It’s ALOT to take in. My Daughter also just found out her LP (a) is in the 400’s & my son will be tested next. Which ALL OF THAT, is also over me, I haven’t had a chance yet to wrap my head around of this yet.

Hi @tamig, welcome to Mayo Clinic Connect! You are in a good place to learn and share encouragement about you elevated LP(a) and cholesterol. I am sad having read about your mom and brother both passing away, and I imagine you are motivated to learn all you can.

I have tried most available drugs to control my LDL. I started LDL apheresis when Repatha didn’t work out. I had 117 every-other-week treatments. I was told I would continue for the rest of my life, or however long my body would tolerate it.

I switched to a new cardiologist at Mayo Clinic managing my cholesterol who systematically got me on several drugs (all I had tried previously) and like @betsya, I eventually started Leqvio (Inclisiran). My cholesterol is under control and well managed for the first time in my life.

I am tagging @wgr123 who has current information about LP(a) treatment from a recent Mayo Clinic Statin Intolerance Clinic visit.

You mention starting Repatha tomorrow. When will get your numbers checked to learn how it’s working? Are you considering apheresis?