Forum like this for heart attack survivors?

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Zoltania Supporter
Supporting Member
Feb 16, 2015
SF Bay Area, California
Does anyone know of a forum like this for heart attack survivors? Someone I know had a heart attack recently. He is only 60 and in otherwise excellent health (not overweight, nonsmoker, no diabetes, runs and lifts weights regularly) so this was quite a shock.

He is doing well now, but I can imagine that the next months will be challenging emotionally as well as physically. I have received a lot of support from the people in this forum and was wondering if there is a similar online support group that I can point him to.
I would strongly recommend that your friend have his Lp(a) tested. This is often the culprit when younger, healthy folks have heart attacks. It is most often overlooked.

Interesting. Apparently there are no treatments for high Lp(a). My friend has already started taking the recommended medications (statin, beta blocker, anticoagulant, blood pressure med, etc.) and is looking at lifestyle changes (though his lifestyle was fairly healthy to begin with).
Apparently there are no treatments for high Lp(a)

Although the available data suggest that Lp(a) lowering could represent a feasible strategy to modify the clinical trajectory of AS, few agents currently exist that lower Lp(a) levels by clinically significant amounts. One novel class of drugs that has Lp(a)-lowering outcomes are the proprotein convertase subtilisin/kexin type 9 (PCSK9) inhibitors

on this:
beyond the effect on plasma cholesterol, PCSK9 showed wide range of effects on patho-physiological mechanisms associated with cellular cholesterol handling, including the accumulation of visceral adipose tissue [13], and the release of insulin by pancreas [14]. PCSK9 plasma levels do not seem to correlate with GFR in studies recruiting a small number of patients [15,16], while a “suggestive” positive association was recently observed in the large cohort of IMPROVE European study [17].

PCSK9 levels correlate with higher risk of coronary artery calcification (CAC) in patients with familial hypercholesterolemia (FH) under statin treatment [20]. In patients with and without AVC, plasma PCSK9 levels correlate with the presence of calcific aortic valve disease (CAVS) but not with its severity [21]. A retrospective analysis of 103,083 individuals revealed that subjects carrying the loss-of-function (LOF) R46L variant in PCSK9 are characterized by lower levels of LDL-C, Lp(a) and a lower risk of CAVS [22], results that were more recently confirmed by a pooled data analysis [23].
I'm not in my lane here, but I just happen to know it courtesy of @Chuck C and our conversations.
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Interesting. Apparently there are no treatments for high Lp(a).
Lp(a) is an interesting lipoprotein, in that lifestyle changes have almost no impact on your levels, unlike LDL cholesterol. Elevated Lp(a) is an independent risk factor for cardio vascular disease and aortic stenosis. However, there is a treatment which lowers it significantly- Repatha, a PCSK9-inhibitor. See the links provided by @pellicle.

High Lp(a) is genetic and runs in my family. I was prescribed Repatha and my level of Lp(a) dropped over 40%. That is not enough of a drop to put me in the "normal" range, but it significantly reduces my risk of a cardiovascular event caused by high Lp(a). Some mistakenly say "there is no treatment for high Lp(a)," perhaps because PCSK9-I is approved by the FDA to lower LDL cholesterol. It does an even better job than statins at lowering LDL and has an excellent side effect profile. However, there is a side benefit of PCSK9-I in that it also lowers Lp(a) as well. Technically, my prescription for Repatha (PCSK9-I) is to lower my LDL, but I also have the benefit that it drastically lowers my Lp(a). My levels of Lp(a) are still about 2x normal, but at least they are no longer 3x to 4x normal. Not all get as much of a drop as I do, but most get about a 15% to 45% drop.

For someone who has levels of Lp(a) as high as mine, the goal is to reduce all other risk factors as much as possible. One example is that the target for LDL is under 50mg/dl. Most people can't achieve a level of LDL under 50mg/dl with lifestyle changes, and still can't even when a statin is added. So, this is where Repatha comes in, to lower it below 50mg/dl, when combined with statin. However, the real benefit I get from Repatha is that it lowers my Lp(a) by over 40%.

Repatha is expensive and attention has to be paid to how the prescription is written and why. If your doctor prescribes it to lower Lp(a), even if you have sky high Lp(a), insurance will not approve it. However, if it is written to lower LDL, it should be approved, although some insurance will still be a little difficult with approving.

So, the current treatment is not at all perfect. Even with the 40% reduction, my levels are still way above normal. But, there are several therapeutics in the pipeline which target Lp(a) directly. One of them lowers Lp(a) by about 80%, known as antisense treatment, is well into the phase III trial stage and is expected to get FDA approval sometime in 2025. This is one reason why people should test for and be aware of whether they have high Lp(a). This is especially important for people who have developed heart disease at a young age and for those who have a three leafed aortic valve and mysteriously developed aortic stenosis. Lp(a) could be the culprit and said individuals might want to consider going on PCSK9-I and might want to go on the much more effective antisense therapeutic when it is approved, assuming that it does get approved.

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