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

I'm in the same boat. Mine is 438. I thought I was doing ok until I had my last Echo and ECG. Not only showed narrowed arteries and calcification, but I had a surprise silent heart attack. I've done a lot of research since I found out I have high Lpa. My primary had no clue what to do a bout it, or if it even needed to be treated. I haven't been able to find much about what to do about it. The consensus it is bad and it raises our chances of heart attacks and complications a lot. Unfortunately I have no clue of how to get treated or with what. I am looking into joining some studies. I know I didn't help much, but at least you know you're not alone.

Rapatha brought my LPa down a little. same here my family lives to be in their 90's my mother is 87 LPa 455. No stroke No heath problems. I think the stress is the worst part.

I added Rapatha and my LPa went down to 435 and LDL 65 HDL85. I am going to switch to crestor from Lipitor. Rapatha brings LPa down a little not much.

Yes, I have 300+ level. Cardiologist put me on 20mg rosuvastatin and baby aspirin. I don't believe statins do much when their side-effects are taken into effect. And nothing can be done about Lp(a)? I thought I was in pretty good health for a 65-yr-old. Active. Work full-time. Now I wonder if I'm going to die soon. Folks in my family generally live to be old!

I have a LPa of 556 second test first was 600. now on lipitor 20 mg and add Rapatha. waiting to get test in a week to see if my LPa goes down. New drug coming out.

My LPa was 600 and went on 20mg of lipitor and changed my diet. Went down 565. Added Rapatha and will test again in a week. This news was very stressful. Only my mother who is 87 would test. She came back with LPa 455. I had a calcium score of 31 with mild mixed plaque. Very clean diet, no smoking, no alcohol, and very rerely eat meat. Hike walk 7 miles a day. So was very surprised. Always had high cholesterol but they always said good high HDL out weigh bad LDL. Feeling like this new stress will kill me.

Try reaching out to Novartis…here is the link. I could not find a study being conducted in Norway. Their outreach number is towards the bottom of the link. My trial office told me they are willing to pay for travel to be in the trial.

They are anxious to get some results….give them a call. It is worth a good try.
https://www.novartis.com/clinicaltrials/study/nct05646381

I am a refugee from Ukraine, currently living in Norway, it is difficult for me to get into the pelocarsen studies 🙁

I believe that mine is 138. I have read recently that aspirin helps prevent the clotting part. I just turned 54. I started blood pressure meds years ago. I also have taken around 2000 to 3000 mg of vitamin C since my 20s on the advice of my dentist. I am taking L-lysine in the same dose now. I am also starting lifting weights and near a blackbelt in karate. I have read that they have a medicine similar to a once a year vaccine that will knock Lpa down by 93% that should be available in about a year. Stay active and enjoy your life. We have no guarantees.

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