Seeking Advice on High LP(a) Levels: Any Insights or Personal Experiences?

#1

G’day fellow Rapamycin News forum members

I hope this post finds you all in good health! Today, I come to you with a specific concern regarding my recent blood test results, which showed a high level of LP(a). I wanted to reach out to our community, especially those who have experienced similar situations or possess medical expertise, to seek advice and gather insights.

To provide some background, I am a 44-year-old male who generally maintains a healthy lifestyle. I exercise regularly, follow a nutritious diet, and consume alcohol moderately. Have posted my bloods below (elevated levels of AST, LDL, and glucose). CAC score of 0 and echocardiogram showing no evidence of stenosis. However, in my latest test, my LP(a) was measured and I’ve hit the genetic jackpot as it stands at 0.55g/L (screenshot below).

My main query is directed toward those who have faced a similar situation in the past. I would greatly appreciate it if you could share your experiences and let me know what advice your doctor provided. Understanding how others have managed or addressed high LP(a) levels would be incredibly valuable to me.

Additionally, I would love to hear from those who are knowledgeable about LP(a) or medical professionals among us. Are there any specific treatments or interventions you would recommend for high LP(a) levels? I have already come across PCSK9 inhibitors during my research (Attia’s Outlive book and podcast no 210) but I am curious if there are other approaches or treatments that have shown promising results (aware of niacin - seems to be some debate around the effectiveness of this?).

Now, turning the conversation towards Rapamycin, I currently take this and want to continue doing so. I am interested to know if any forum members who have high LP(a) levels informed your doctor about this? Was thinking about paying the GP to read the Evaluation of off‐label rapamycin use to promote healthspan in 333 adults paper…….

Lastly, I would like to mention that my long-time doctor has relocated (while they didn’t prescribe me Rapa, they were aware that I was taking this off label). So essentially this means I will be seeing a new GP. As a result, I am faced with the challenge of establishing a new doctor-patient relationship along with the above.

Thank you in advance for any advice you might give me.

Cheers
Dan

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#2

This is just an opinion piece, but I found it very interesting:

http://orthomolecular.org/resources/omns/v06n20.shtml

I take 2 grams of vitamin c (liposomal)/day. Also a couple grams of lysine. I think lp(a) is more genetic, but mine went down when I took more vitamin C. I took so much I got a kidney stone though, don’t do that.

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#3

Thankyou - just read the article. Interesting! Will mention this to my Doc :pray:

#4

Sorry to hear Dan / @DMac. At the same time, luckily it looks like (despite there not having been good choices in the past) there are several very promising drugs in the pipeline that are more effective at lowering Lp(a) than even statins and PCSK9i’s are at lowering overall Apo B / LDL.

So hopefully this is a thing that medicine really will be able to crack - it’s looking like it may be almost done (knock on wood) and that soon there may be several new FDA approved options.

These news drugs can basically obliterate Lp(a) levels by taking them down by >80-90%!!!

Do note that while the theory is very strong that Lp(a) is causative of cardiovascular disease and death (in todays modern world where we don’t befit of the positives of Lp(a)), most of the reported data so far (at least as of 6-12 months ago when I looked into it) were about the success of the drugs at Lp(a) lowering and there has been less reporting on the subsequent impact on/clinical endpoints of cardiovascular events so far (hopefully just because that takes longer time to see and validate given lags from treatment onset/compound duration).

Check out (a) Pelacarsen and (b) Olpasiran both years in to Phase 3 studies if I recall correct.

Newer SLN360 and LY3819469 are also in clinical trials.

Given how promising above is looking, I decided personally to bite the bullet, make the big investment and start taking a PCSK9i - which in-line with reports I heard from others has lowered my Lp(a) by about 30%. Hopefully I’ll only have to do that for a few more years before one or multiple of the Lp(a) drugs come online.

The other advice I’ve gotten from my cardiologist has been to keep my other controllable factors optimal, including being more aggressive in lowering Apo B/LDL overall.

The one other thing I’ve considered doing - especially as it may only be for a few years before the Lp(a) drugs are here - is “Lp(a) Apheresis” (especially Germany, to some extent UK I think do this more than the US for high Lp(a)).

A top Lp(a) person to follow in this space is Sam Tsimikas, Professor of Medicine and Director of Vascular Medicine at the University of California San Diego. Perhaps most knowledgeable person in the world about Lp(a). Note that he has two Twitter handles, you want Lpa_doc for the one that is focuses on Lp(a).

This is probably a good be starting point for getting an overview of the increasingly near term and seemingly promising pharmaceutical solutions:

And here you can see a bit about Lp(a) Apheresis:

www.ahajournals.org/doi/full/10.1161/ATVBAHA.116.307983

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Rapamycin and risk of cardiovascular disease
#5

Wow - thanks so much for this information and detailed post @Neo! It’s really appreciated :blush:

I’ll do some research about some of those new options that are hopefully ’on the horizon’.

Def thinking the PSCK9i might be the way to go for me to in the interim……

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#6

Michael Greger takes, and recommends Brazil nuts for LDL.

One of the craziest studies I read all year involved feeding people a single serving of Brazil nuts to see what it would do to the cholesterol levels of healthy volunteers. They gave ten men and women a single meal containing zero, one, four, or eight Brazil nuts, and found that the ingestion of just that single serving almost immediately improved cholesterol levels. LDL, so-called “bad” cholesterol levels in the blood, was significantly lower starting just nine hours after the ingestion of nuts, and by no insignificant amount, nearly 20 points within a day. Even drugs don’t work that fast. It takes statins around four days to have a significant effect.

But that’s not even the crazy part.

The researchers went back and measured their cholesterol five days later, and then 30 days later. Now, keep in mind they weren’t eating Brazil nuts this whole time. They just had that single serving of Brazil nuts a month before and their cholesterol was still down 30 days later. It went down and stayed down, after eating just four nuts… That’s nuts!

The actual study is downloadable below:

https://www.researchgate.net/publication/248385213_A_Single_Consumption_of_High_Amounts_of_the_Brazil_Nuts_Improves_Lipid_Profile_of_Healthy_Volunteers

Was it to increase sales of Brazil nuts? Not if the recommendation is four nuts a month.

Sample size is small; but so is the risk of intake. Benefit to risk ratio is huge.

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#7

You might wanna check apoB ratio to apoA-1, that might be an important detail in deciding how aggressively you might wanna treat or lower LP(a). Take into consideration also other risk factors (metabolic syndrome risk especially), inflammation markers and talk to doctors. I personally would take into consideration also the fact that taking rapamycin might be ASCVD protective. And since you are relatively young still with no obvious other risk factors from what you wrote you might just wanna do nothing for a while. I know I personally would wait, maybe something else will be done in a way of research, prevention or medicines in few years and few years shouldn’t be that decisive in longevity IMO.

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#8

Im based in the UK. My dad had an MI aged 59. Knowing I have a FH of IHD I had my Lp(a) tested. 190nmol/l. High end of ‘moderate’.

I tried to argue that I should have a PCSk9i but the NICE guidelines (that advises clinicians) and also my hospital lipidologist said I dont qualify unless I have either familial hyperlipidaemia or an ischaemic event. I cant afford £400 a month that Id have to pay if not on the NHS.

So Im doing the supplement changes as well as lifestyle changes eg B3, aspirin etc.

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#9

Perhaps ask about above?

#10

Can MD’s prescribe Pelacarsen now off label given it is not FDA approved yet for lowering Lpa. My LPa was high in recent labs (124.9 with the range being > 75; my Apolipoprotein B was good: 56 (range >90).

My LDL was good at 58 (range: 0-99).

Hoping I can get my hands on Pelacarsen to lower Lpa. Any advice?

#11

Probably tough in the US. Technically a doctor AND the company could request “compassionate use” exemption from the FDA (similar to how Trump got both antivirals and antibodies before they had authorization for use by the FDA if I recall correct).

But big companies tend to be cautions and not do that.

Perhaps you could get it from some other country though?

Or you could see if they still are recruiting for any trials.

#12

Thanks Neo for the input. Yes, I’d be interested to see if I could get from another country other than US my home base.

#13

I’m not an expert at this stuff by any means, but wonder if Lp(a) seems very high in relationship to your Apo B/ LDL. Lp(a) is one form of Apo B…

Have you checked that there were no errors, have you by any chance checked those values more than once?

#14

Neo, yes had the same labs done three months prior to these and LPA and ApoB were similar.

#15

Looks like a few hurdles to jump through to get the subsidised PCKS9i in Oz. Also, I noticed under the Restrictions heading (link below), it doesn’t actually refer to Lp(a) and they want you to take a statin for 12 weeks, then retesting LDL.

Doesn’t make sense to me as we know LDL will be lowered by a statin but a statin wont impact on Lp(a)……go figure :man_shrugging:

https://m.pbs.gov.au/medicine/item/11193D-11485L-11972D-11986W.html

#16

@Stiv thanks for sharing your experience!

Just wondering if any of the interventions you have tried have lowered your LP(a)?

#17

Haven’t rechecked Lp(a) yet. They had to send the sample to a specialist centre. My GP really has no idea what Im talking about.
Ive been taking Niacin, Bergamot, Pine Bark and Gotu Kola along with 75mg aspirin three times a week. Minimal evidence but worth a trial in the absence of a PCSK9i.
Hope to have a retest later this year.

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#18

Reminds me of an earlier post in the CVD thread. Scroll to page 37. It is an article by Joel Kahn, MD, a cardiologist.

Seems centella asiatica (gotu kola) is not only cardioprotective,but also mitoprotective. So it may be antiaging as well.

Neuroactive Effects of Centella asiatica (L.) Urb.: Cognition

Cognitive-enhancing effects of CA extract have been described in numerous studies, in both normal animals and models of aging and neurodegenerative disease (Doknark et al., 2014; Sari et al., 2014; Sirichoat et al., 2015; Yolanda et al., 2015; Wong et al., 2019; Sbrini et al., 2020). In early studies, CA extract was found to improve memory and ameliorate biochemical and mitochondrial dysfunction in a mouse model of aging (Kumar et al., 2011). In other studies CA was found to confer protection against hippocampal dysfunction, a region of the brain that plays a critical role in learning and memory and is severely affected in AD (Veerendra Kumar and Gupta, 2003; Giribabu et al., 2014). Further, key bioactive components of CA have also been shown to affect learning and memory in models of aging and neurodegenerative disease. For example, asiaticoside has been found to enhance cognitive performance in aged animals (Lin et al., 2013) and a rat model of AD (Zhang et al., 2017). The cognitive effects of CA extract have been linked to changes in synaptic plasticity (Lin et al., 2013) and excitatory neurotransmission (Wanasuntronwong et al., 2018; Wong et al., 2020) as well as improved neuronal health and survival in models of aging and disease (Gray et al., 2018b; Gray et al., 2018c).

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#19

Can’t you forgo the 12 weeks of statin use if (for instance) the statin causes intolerable muscle pain? They might make you try another statin and/or change in dosage regimen, but some people (like me) can’t tolerate even very low doses without muscle and joint pain. I get zero side effects from pcsk9 inhibitors, on the other hand, which have cut my Lp(a) by 20-30%.

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#20

I’m in a similar situation. I got my Lp(a) checked through Marek last week and found that I was at 193 nmol/L, which is pretty concerning. My LDL-C and ApoB are at 65 mg/dL and 59 mg/dL, respectively. I’m worried that a doctor won’t put me on either a statin or PCSK9 because a few things I’ve read said that LDL-C needs to be higher, like 70+ mg/dL before they’d do anything. Plus I’m relatively young at 37. Seems like they might even wait until you start to have issues or blockages before they’d do PCSK9.

Since I don’t have a doctor, I’m going to try to find one and plan to get them to recheck the Lp(a) and insist on either a echo cardiogram and/or calcium score to look for aortic valve stenosis and extent of damage. Then, I’ll got down the road of trying to get on a statin and try to convince them to go the PCSK9 route.

This is a perfect example of why to check Lp(a) levels, my LDL-C has always been in the 52-58 mg/dL range until I started taking rapa about 6 months ago, and now it’s 65 mg/dL so not a huge increase. But, Lp(a) has probably always been this high and possibly causing plaque/calcium buildup. It’s quite a bummer since I thought I was doing most stuff right.

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