#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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#223

I’ve been on empagliflozin for at least a few years now, and my most recent echocardiogram (last year I think?) showed no progression of my mild aortic stenosis from high Lp(a).

I also wonder if the incretin mimetics (GLP meds) will show anti-aortic stenosis effects.

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#224

ASCVD genetic medicine, functionally vaccine, portfolio, $500 m in the bank, is that good? One time treatment.

VERVE-101 (PCSK9)
VERVE-201 (ANGPTL3)
VERVE-301 (LPA)

https://ir.vervetx.com/news-releases/news-release-details/verve-therapeutics-announces-pipeline-progress-and-reports-3

Their mission statement changed.

If it works this is going to happen. It’ll look like the Dark Ages before that time, and in this time filled with hucksters, grifters, quack doctors, selling their bullshit cures and preventative strategies. The most significant invention since vaccines if it works.

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#225

Guys, sorry to say it, but the NHS simply isn’t going to give you what you need. Waiting is futile and there’s no point just sitting around until you have a heart attack, so that they can finally give you the medication to prevent a heart attack. It makes no sense.

@Stiv even as a doctor, they don’t deem you worth the 340 quid a month that it costs (BNF is only available in the UK | NICE).

The NHS still treats PCSK9i like they’re some sort of exotic medicine. But these drugs have been on the market for more than TEN years old now. The first clinical trials were almost 15 years ago.

And really, they had you on 80 mg of Atorvastatin? That’s a dumb protocol which clearly hasn’t moved on for decades. It’s well established that you get like 80% of the statin benefit from 10 mg. You’ll get better results and less side effects with 5 mg Rosuvastatin and 10 mg Ezetimibe.

IMO, you need to go and demand better medications, and don’t accept their shoulder shrugging. Alternatively, go seek private prescriptions, go abroad, purchase things yourself. The average UK male has a healthy life expectancy of only 61, and then spends 10 more years living with chronic health conditions. It’s not good enough to settle for “normal”.

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#226

If you have muscle pain from atorvastatin, I would drop it. There are other options. There is of course bempedoic acid and ezetemibe, but sticking with statins, why not try pitavastatin? It doesn’t have nearly as many muscle complaints from patients and doesn’t disregulate your glucose control either. If you can’t get it from your doc, you can always import it from India, it’s not that expensive - that’s what I have done. I’m in the US, but I have completely given up on my PCP and my insurance. I’m over begging and arguing and waiting and hoping. Time flies, and the only one who cares about your health is staring at you in the mirror.

I’d try pitavastatin and see how I feel, and test my lipids. It might work. Beats hoping and waiting. YMMV.

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#227

My mother went from 80 mg Atorvastatin to 10 mg Atorvastatin and Ezetemibe. Her LDL was lower, HDL higher and muscle pain decreased.

I have no idea why PCPs don’t prescribe low dose statin and Ezetemibe and opt for high dose statin instead. It doesn’t make sense to me.

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#228

Thank you for all your suggestions @relaxedmeatball, @CronosTempi and @DeStrider

I agree with everything you’ve all stated and if I knew what I know now I would never have agreed to taking 80mg Atorvastatin. My GP (or PCP) was apparently taking advice from the lipidologist at my local hospital’s Metabolic Clinic. Because my elevated triglycerides weren’t responding to 20mg Atorvastatin they advised to double it to 40mg. After three months my triglycerides had actually slightly increased so they advised to double it again to 80mg. In the meantime I had started investigating and discovered that triglycerides can respond to high dose Omega 3 so had increased my daily dose from 1g to 4g. On the next lipid panel my triglycerides had miraculously nearly halved. I told my GP that this was probably due to the increased Omega 3 but she dismissed that idea and said that my body had just needed the extra strength statins. At this stage I still trusted the NHS so accepted this explanation. Thankfully I still continued with the high dose Omega 3 though.

My trust started to wane after discovering Rapamycin News and all the amazing knowledgeable people who post on here. My CVD protocol is still evolving but this is it for now:

Atorvastatin 40mg (I shall continue to reduce this in steps, first to 20mg and finally 10mg over the next 6 months)
Ezetimibe 10mg
Fenofibrate 160mg
Nebivolol 1.25mg
Aspirin 75mg (or 81mg depending on source)
Colchicine 0.5mg
Niacin 3g
Omega 3 from algae 4g
Metformin 1g
Acarbose 50mg
Finasteride 0.5mg
Nattokinase 10000FU
Regular and Kyolic garlic
Geranylgeraniol 150mg
plus some other supplements like K2, Vitamin D, Pine Bark, etc.

On my list to add gradually over the next 6 to 12 months:

Empagliflozin
Bempedoic Acid

Since reducing the statin dose to 40mg my muscle pain has eventually subsided but it’s still there which is why want to continue to minimise the dose. I will also try alternative statins if I still get pains at 10mg. However I don’t want to abandon statins because they have done a remarkable job in lowering my LDL if nothing else. And yes my HbA1c has inched up a little since starting Atorvastatin in spite of me now taking Metformin and Acarbose.

Even though they would probably be the most helpful thing for my Lp(a) I don’t want to take the risk of importing PCSK9 inhibitors from India due to the temperature storage issues and it would appear it’s impossible for me to obtain them legally in England.

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