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

My Lp(a) was 312 nmol, had a NSTEMI 5 years ago at 57, and still have chronic angina. When I was prescribed Repatha it decreased to 267 nmol. 3 years ago I joined the Horizon study - a clinic trial for Pelacarsen. Pelacarsen lowers Lp(a) 80%. We think I am on the real deal, but I have not had Lp(a) tested since. There are at least 2 more studies on medications to lower Lp(a)…I would try to get into one if you can. Mayo Clinic should be able to advise you…

Otherwise, try to get on Repatha or Leqvio. They are PCSK9 inhibitors, but also helps us with high Lp(a). To give you a little peace, my mother’s Lp(a) was tested to be 267 nmol at 85 years old. She has never taken statins or other cholesterol lowering medications, but she did have a CABG at 73 and now experiencing mini strokes. My conclusion after a few years of worry but seeing her experience, is that high Lp(a) is not a death sentence, but we need to take extra good care of ourselves.

So be proactive and be good to yourself. I eat a modified Mediterranean diet and doing well now.

Hug cyber hugs…I know exactly how you feel.

Thea

I'm 34, and I also have 125 mg/dl. I'm scared, did you have any health problems before you found out your lpa level?

I think you pretty much killed off this convo that was specific to Very High Lp(a) concentrations.
This is not the place to air hot opinions on other subjects.
I’m out.

thank you, Colleen. I couldn't figure out why the edit mode didn't work.

@whineboy and @loriesco, thank you for respectfully working things out. I have reviewed the recent discussion and removed the joke as per the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/).

Wit, sarcasm and joking will often be misunderstood since we only have words on the page without the benefit of context, body language and tone of voice. I appreciate the apology and bringing the topic back on track.

Moderation of Connect also includes members helping out with reporting anything that needs a moderator's review.

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First Amendment protections only apply to actions by government entities that impact one’s speech. No FA rights outside of that.
Lots of folks get fired from private sector jobs for imprudent social media posts, the FA is not involved.
I do thank you for the apology.
I am finished with this diversion. Back to lipidology.
Sorry for the hijack, but this was very disturbing.

Jews and Lipo proteins go together and are familial. To the matter at hand if you have high LPA and/or CardioVascular Disease AND Jewish, you might be interested in the research: https://pubmed.ncbi.nlm.nih.gov/1836489/

I can't take responsibility for what offends everyone. I also am not obligated to be responsible for the REASON you or anyone else comes to this platform. Others may appreciate the comment as sardonic wit. It does add a volume of numbers to the comment. It does not diminish the Holocaust nor my work AGAINST antisemitism in the backdrop of the American political environment and rising antisemitism. All I can do is apologize to you. As I indicated, I can't find the edit button for my comment (which I have used many times!) I hope you will accept my apology.

I am here for the topic at hand.

I am Jewish. And it, unfortunately is all too important to dismiss. I am sorry you are offended. My family died both from the Holocaust and Pogroms. When these poor immigrant families came here, they ate margarine. Only margarine. It was cheap, and it was poison for them. After I was educated about the evils of trans fats -- it was still impossible to get them to change. It saddened me to see the heart disease occurring. I also went on to look at DNA of Jews for purposes of cancer (BRCA 1/2), vascular heart disease (which I unfortunately inherited); lactose intolerance (which I, unfortunately, could not avoid inheriting because both mother and father had the gene) and gluten intolerance - for which I now understand the eating habits in my family. I help others to TRY to see the DNA and hereditary problems caused by interbreeding within DNA pools. So, although I am so sorry you are offended, there is some aspect of truth in the statement. I had meant to include that I was Jewish but I got distracted. For some reason, I can't edit this post? Let me just say that growing up an artist -- everyone is offended by everything. But the value of the post as a whole should NOT be removed, the fact that I did NOT mean to insult to you -- and that we should "never forget" these things -- I hope will offer some catharsis and peace.