Anyone else out there with extremely high lipoprotein (a)?

Be sure to read about the side effects of Repatha.

What level trial? It would be nice to jump in when there is no placebo. Does that ever happen in trials at the end? Final stage?

Every drug has side effects, Repatha is no different. Thankfully, I'm not feeling any.

And yes, we might find out some years from now that while it can lower LDL, there are other effects that are not good. See the Niaspan (niacin) studies, for which I was a part and took it daily for 10+ years. Each has to make a decision what risks they want to take.

My Lp(a) is 220 nmol/L since the first time I had it measured in 2007. That’s high risk and is in the 95th percentile of the measured Lp(a) population. It causes me no issues.

I control what I can control. I keep my LDL < /= 70 mg/dL, triglycerides below 50, A1c between 4.8 and 5.2%, BMI at 25, blood pressure < 120/80. My last total coronary artery calcium score was only 135 which is within the 50th percentile of people matched for age, gender, and race/ethnicity. That’s decent for a 70 year old male with high Lp(a).

I was able to reduce my Lp(a) from 220 nmol/L to 44 nmol/L (80% reduction despite dogma that states only a 20-30% reduction can be expected) using 2,000 mg/day of extended release nicotinic acid. While it worked, it caused me an absolute myriad of health issues that fortunately were reversible after stopping Endur-Acin.

Yes, I'm 56 and our Family are all being tested as a few of us have Familial Hypercholesterolemia , some on the lower end of LP(a) 212 and myself at 544 LP(a). I personally am going through genetic testing as I had my first heart attack very young as well as stroke. I also Have a Epstien anomaly from birth called myocardial Bridge , and issues MVP. We have multiple members who have heart issues and cancers so testing seems imperative as we each have children and grandchildren ( two who have had strokes young)
I can only tell you that Genetic testing is not for you medically, sure it can tell probabilities but it's for your family members after you. It may be helpful if you are having issues with medications but this may be an entirely different test.
There is No cure for Familal Hypercholesterolemia but it's important that you keep your LDL [Bad cholesterol]at a low Healthy level and your HLD in Good healthy numbers - this is your good cholesterol. Many Dr's will say they can give you a STATIN.. this helps but doesn't solve it, often times you need another med with it. They are still working on finding a way to lower our LipOprotien A.. but Its in the future.

Test LPA is back👏
It’s down from 270 to 8 within 5 weeks after stopping statin.

Hello Sue M. I had my blood drawn last week to check my lipids and for the first time the Lipoprotein A. My cholesterol level is at 218, LDL is 136, HDL is 56 and Triglycerides 130. The Lipoprotein A came out to 372. Too high since the Normal is < 75. Scary. My PCP told me the Lipids are going down which is great. The Lipoprotein A was ordered by my Cardiologist. I will see him this coming Friday. I have been doing the Mediterranean diet for months now and it seems is working, I also walk everyday for one hour, I don’t eat sweets, don’t drink and never have smoked. I have been reading a lot about Lipoprotein A and statins don’t help lower it. I heard about Vit C which I have been taking for a while before having the Lipoprotein A and Magnesium too. My mom had 4 bypasses when she was 77 and died at 91. My dad and mom never had high cholesterol or triglycerides which is so strange but both developed maturity onset diabetes at 85(dad) & 80(mom). Both were treated and well controlled. I found out that I have pre-diabetes (I’m 71) with normal glucose but A1C of 5.7 which is high but at the high normal. I love chocolate and I know it is my fault having that A1C high but I definitely eating chocolate or any kind of sweet. Anyway I don’t know what my cardiologist have to say but I confess I am nervous. I know it is genetic. Probably my brothers have it high too and don’t know it. I guess I will keep my diet very strict. I have lost 4 pounds so far, my target is 15 pounds. (170 before, now 166). According to what I have read cardiologists advice to lose between 2%-7% of your weight. I will post comments after my visit with my cardiologist. Stay healthy and safe. Hopefully we hear more people about this topic. The truth is that seldom cardiologists order Lipoprotein A to their patients, they need to ask but the issue is that there are zillions of people out there who don’t even know this test exists. That is sad. Hope you get better. Let’s keep in touch if you don’t mind. Thanks. Vivian N

Hi,
After trying for several years to manage my ever increasing LDL and Lipoprotein A, I had a blood test done that revealed that my situation was genetic and that I wouldn’t be able to manage it through lifestyle changes alone. It was good to know that !

Hello. What did you do to keep all those values so great. Are you taking statins? How about the Mediterranean diet? I have been doing this one for quite awhile. Vit C? I started it today even though I eat oranges every morning for a long time since I was a kid. I am 71 now. I exercise 1 hr daily. My values are normal but my Lipo A came out high 357 It was the first time I had this test. By the way I requested it because my cardiologist has never done it. I was just reading about lipids and the Lipo A popped up. I was reading that cardiologists don’t irder it because there is no drug out there for it only 4 are on trials. Anyway I think I am doing the right thing but unfortunately I got the gene. Stay safe and healthy. Happy 4th of July. Vivian N.

Hi Vivian: I've been on this cholesterol journey for more than 40 years now and from working with doctors, dieticians, and my own research, unless a person has an awful diet (doesn't seem the case for you), you can lower your cholesterol by about 10%. Everything after that is genetics or drugs. I started with total cholesterol in the 400's and LDL over 250. Statins and ezetimibe (Zetia) dropped that by more than half, but the LDL, at 105-109 was too high. The cardiologist added Repatha which has dropped all the numbers to an amazingly low level. Next blood draw is on Monday.

Did your MD order a lipoprotein B test? It's the carrier for LDL particles and the one my MD is most concerned about. I'm hopeful that the 3-drug regimen keeps working.

Good luck in your journey.