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

Lilly is doing a clinical trial.

OMGOSH! Mine was like 268 and I thought that was Crazy. Yes it is very scary! I only found out about mine after an ischemic stroke diagnosis. I was 49. It runs in family usually. 12 years later and I have been prescribed 1500 mg niacin (prescription) OTC does NOT WORK. It has helped somewhat. I have always exercised and been extremely physically active as have my family members. I had been on simvastatin for several years but was switched to atorvastatin after stroke diagnosis so my LDL was low and my HDL high. Statins are not helpful for lipoprotein (a)

Cleveland clinic diagnosed me AFTER stroke, apparently the labs don't even check you're LPa until catastrophic event. My 1st cousin literally had a stroke as a freshman at college, another a heart attack in 40s, my sister a TIA in 30s on and on. My sister who exercises, never overweight, has watched her diet religiously also has high LP(a) and our family has high factor VIII. Keep moving!!! Keep your blood moving! I am also on low dose aspirin with the atorvastatin 40mg. I drink a glass of red wine every evening. I haven't had anymore events, am living with completely occluded MCA and bc I kept moving no noticable deficits, only I can tell that my fingers on the other side do not work quite right. My youngest cousin recovered completely and had two healthy children. Keep moving! Find a good women's cardiologist and a lipidologist. Dr. Cho at Cleveland clinic (excellent bedside manner and awesome doc) and Dr Carranza-Leon at Vanderbilt. I haven't ever lived close enough to go to Mayo

There is some conflicting information online, but most apparently indicates that studies support that statins do not meaningfully increase lp(a).

Here one such review ... I am not a medical professional.
https://pubmed.ncbi.nlm.nih.gov/34849724/

You are right,
Statins can have the side effect to higher LPA dramatically.
My husband is off the statins now since a few weeks, decided to pass on Repatha, after 2 shots, to see how his lab turns out in a few weeks.
We will keep you updated.

Weird you mentioned fingers. I noticed the same -on my left hand there is not as rapid a response to like finger tapping etc. Ugh.

Why did he pass on Rapatha?

Found this dated 10/23.

Novel Pharmacological Therapies for the Management of Hyperlipoproteinemia(a)
Abstract
Lipoprotein(a) [Lp(a)] is a well-established risk factor for cardiovascular disease, predisposing to major cardiovascular events, including coronary heart disease, stroke, aortic valve calcification and abdominal aortic aneurysm. Lp(a) is differentiated from other lipoprotein molecules through apolipoprotein(a), which possesses atherogenic and antithrombolytic properties attributed to its structure. Lp(a) levels are mostly genetically predetermined and influenced by the size of LPA gene variants, with smaller isoforms resulting in a greater synthesis rate of apo(a) and, ultimately, elevated Lp(a) levels. As a result, serum Lp(a) levels may highly vary from extremely low to extremely high. Hyperlipoproteinemia(a) is defined as Lp(a) levels > 30 mg/dL in the US and >50 mg/dL in Europe. Because of its association with CVD, Lp(a) levels should be measured at least once a lifetime in adults. The ultimate goal is to identify individuals with increased risk of CVD and intervene accordingly. Traditional pharmacological interventions like niacin, statins, ezetimibe, aspirin, PCSK-9 inhibitors, mipomersen, estrogens and CETP inhibitors have not yet yielded satisfactory results. The mean Lp(a) reduction, if any, is barely 50% for all agents, with statins increasing Lp(a) levels, whereas a reduction of 80-90% appears to be required to achieve a significant decrease in major cardiovascular events. Novel RNA-interfering agents that specifically target hepatocytes are aimed in this direction. Pelacarsen is an antisense oligonucleotide, while olpasiran, LY3819469 and SLN360 are small interfering RNAs, all conjugated with a N-acetylgalactosamine molecule. Their ultimate objective is to genetically silence LPA, reduce apo(a) production and lower serum Lp(a) levels. Evidence thus so far demonstrates that monthly subcutaneous administration of a single dose yields optimal results with persisting substantial reductions in Lp(a) levels, potentially enhancing CVD risk reduction. The Lp(a) reduction achieved with novel RNA agents may exceed 95%. The results of ongoing and future clinical trials are eagerly anticipated, and it is hoped that guidelines for the tailored management of Lp(a) levels with these novel agents may not be far off.

For the first 2 injections we paid $500, for the next 4 it would be $700 ( doctor wasn’t very helpful in helping us to find a way that Medicare would pay) second we want to make sure that the high LPA isn’t a side effect from Repatha, he never before had it it so high.
After stopping Statins, it already dropped very quick.
So we will find out if it drops further on ( side effect) or Repatha worked,
In the last case, we will use Repatha again, we have a alternative cardiologist at home in Alaska.

If it makes you feel any better, my test came back >600, so I don’t even know how high it is. It’s my understanding that we’re still a year away from a drug that specifically targets Lp(a)