#203

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#204

Thank you. I was hoping for a somewhat shorter timeline as would love to have these new drugs available for my high Lp(a).

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#205

Unless it is a Covid vaccine!!

#206

Compared to that one that was in Phase 2, these might be approved faster:

  • Olpasiran is currently in a phase 3 clinical trial named OCEAN(a) (NCT05581303)

  • Pelacarsen, another Lp(a)-lowering therapy not previously mentioned, is also undergoing a phase 3 trial called Lp(a)HORIZON (NCT04023552)

And as discussed elsewhere on the forum (do a simple search),

  • Obicetrapib, an oral CETP inhibitor, cuts Lp(a) by a lot - and will potentially be approved for other CVD uses already next year or early 2026 (and if so you could perhaps get it off label)
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#207

Thank you. I actually took it a step further and sent the lead investigator of the JAMA article an email. He informed me that Eli Lilly is entering Phase 3 with lepodisran and they are taking names for people to apply for this clinical trial, which I did. Hoping they accept me and that I do not receive a placebo!

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#208

image

https://xcancel.com/Drlipid/status/1870629961377153333#m

So it appears according to Drlipid that non-Apo(a)-LDL’s decrease with statins is between one or two orders of magnitude more than the Lp(a) would increase with statins.

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心血管健康
CVD and high Lp(a) levels
#209

Do you know what the inclusion/eligibilty criteria for might be for the Phase 3 trial? Last time into this and similar trials, one has to have coronary disease or such an event. Asymptomatic patients were excluded.

#210

Nick
Here is the link: Find Lilly Clinical Trials | Learn About Our Research

Click on the ‘take the next step’ link to see their criteria.

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#211

The problem is likely to be that anyone taking Rapamycin wont be accepted into a phase 3 or 4 trial as additional meds, unless really ‘standard’, are likely to be a cause for exclusion

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#212

Thank you. I called them. After doing the entire questionnaire for nearlyn10 minutes, Nurse told me i didnt qualify as sybject must have had a cardiac event or hx of Coronary disease etc!

Participants Must:

  • Have high lipoprotein(a) level, at least 175 nmol/L, and either:
    • Be at least 18 years old and have had a cardiac event (like a heart attack or cardiac bypass surgery), a stroke, or peripheral arterial event (like a stent in an artery in the leg or an amputation)Or
    • Be at least 55 years old and have risk factors for a cardiac event, like narrowing of the coronary or carotid arteries; a condition called familial hypercholesterolemia; or a group of other risk factors for cardiovascular disease
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#213

In the UK I was told I wouldnt be funded until Id had a cardiac ‘event’ ie no primary prevention

#214

Is that the NHS or a private insurer?

#215

NHS. NICE guidelines.
Im on a database waiting for when the drug is publically funded. Lipidologist reckons 2026

#216

I’d still be surprised if they ever prescribed it unless it was dirt cheap. I have crazily high Lp(a) (tested privately while visiting USA) and my GP just puts their hands up and says we don’t routinely check that on the NHS. They also say they are not allowed to prescribe anything other than statins unless it comes from the “Metabolic Clinic.” I’ve been waiting for a referral for over 4 years.

Basically it seems the NHS is reactive rather than proactive with CVD. So unless you have a stroke or heart attack you can’t even see a specialist.

#217

The NHS is ordinarily reactive but has some centrally set preventative systems such as screening procedures. However, it is v slow to change with science.

#218

Im a doctor so maybe that helped when I insisted on seeing an NHS lipidologist.
She asked how I knew about Lp(a) and how I had it tested.
She sympathised with the lack of primary prevention but added me to a database for future PCSK9i treatment when it emerges.

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#219

Randox do Lp(a) as part of their well man/well woman testing. This is sold as two tests for GBP 350
https://randoxhealth.com/en-GB/in-clinic/everyman-everywoman

I think one of the more advanced medichecks packages also includes Lp(a).

I don’t record Lp(a) in my spreadsheet so cannot find which tests include it.

Randox have branches across the UK (they are an NI company).

#220

Lp(a) test is available free on the NHS. Depending on where you live determines which lab your GP needs to send it to. Im in the north so it was anslysed by the RVI in Newcastle. Had it done 3 times now since 2020.

#221

That’s good to know, maybe there is some light at the end of the tunnel. I have received sympathy too when I have said it feels like I’m bashing my head against a brick wall. And I think my GP shares my frustration with not being able to offer anything that might help (like PCSK9i for example). Unfortunately I don’t think sympathy reduces our CVD risk much though.

Since there seems to be a lack of either resources or willingness in the NHS I have resorted to taking the matter into my own hands. I have been taking 3g of Niacin daily since April and will also be starting Fenofibrate in January. With my GP’s approval I have reduced Atorvastatin from 80mg to 40mg as we hoped this might reduce the amount of muscle pain I get. I’m hoping it’s transitory but the muscle pain has actually increased substantially since making this change nearly four weeks ago.

I had looked into Lp(a) testing in the UK but it seemed exorbitantly expensive compared to the USA much to my surprise. Since we were going to be in the USA anyway it was a no brainer to have the bloods taken there. A full extended lipid panel including Lp(a) and ApoB plus a few other unrelated markers I was interested in came to about $80 with results emailed within 72 hours.

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#222

Cross posting that flozins might help with on the the largest risks of higher Lp(a)

Any thoughts people?

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