The latest news on PCSK9 Inhibitor experimentation:
Someone got their liver gene edited for PCSK9 in New Zealand. Could lower bad blood cholesterol by 60%.
First genetic therapy with a prevention angle. In the future, maybe, one-and-done editing at age 30 for all of us. End of clogged arteries?
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MAC
#22
This is surreal. End of clogged arteries; why stop there? How about a complete whole body risk-genes refresh? Are there limits to human translation, other than maybe ethics, but clearly, money and access will crush through any ethical barrier as long as there are willing providers and jurisdictions.
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I’m excited about the potential of this type of therapy. Will be great if/when they can do the same thing for Lp(a)
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Got a CAC score of 537 about 7 months ago, which caused me to see a cardiologist. I had to suggest Repatha. He was just going to put me on a statin.
I’ve been on the Repatha for about 6 months now, and have noticed no side effects. I just got a NMR Lipoprofile done. LDL went from 195 to 22. Total cholesterol went from 280 to 105. HDL-C went from 65 to 83. LDL-P was a very high 3023, and came down to <300. Small LDL-P (the bad kind) went from 1804 to <90. Triglycerides went from 130 to 48. LDL particle size couldn’t even be measured because the number of LDL particles was too low. Very happy with these results.
Also, for anyone thinking about starting Repatha/ Evolocumab, you should consider injecting in the stomach area. The instructions suggest injecting either in muscle, like the thigh, or pinch a fold of skin and fat around the stomach and inject on the top of the pinch. I tried the intra-muscular injection and was sore for weeks afterwards. Using the stomach fold location resulted in no soreness at all.
Your cardiologist may well have some salesman-provided samples he can give you, or a card good for a few doses from the pharmacy for free. I got a couple months worth for free from my doc. If you have private insurance, you can get a copay card that lowers your copay a lot- the copay is $5 for the first 3 months, and $200 for the remaining 9 months. Resets every year.
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tongMD
#25
How did you qualify for a PCSK9 inhibitor without a documented statin intolerance or contraindication? If you don’t mind, did you have a documented genetic disorder?
Well, apparently in the US you just have to convince the cardiologist. At least in my case, that’s what happened. He did have to jump through some hoops with the insurance company, but my CAC score was enough for them to approve it.
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tongMD
#27
Hmm a few years back when I was on the heart failure team rotating with several cardiologists, it was a lot of hoops to get PCSK9 inhibitors even with statin intolerance. If it’s possible for you to figure it out, I’d like to know how your cardiologist did it.
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You must have really good insurance! I’m frankly baffled by how much your LDL-C and LDL particle numbers lowered without also being on a statin. Did you start any other lipid-lowering meds and/or supplements in addition to the Repatha? Significant changes to your diet?
(BTW have you had your Lp(a) checked?)
Sorry, yes. Should have mentioned that I started Rosuvastatin also at the same time as Repatha.
However, I had previously been on Simvastatin which I took on my own, ordered from an Indian pharmacy. My results while on it were total cholesterol 219, LDL 132, triglycerides 87, HDL 72, LDL calc 132. I had to go off it due to myalgia (muscle aches), and my numbers went up to those mentioned previously. I haven’t had any myalgia problems with Rosuvastatin, though in the meantime I had read some papers that indicated statins could cause reduced CoQ10 levels, which might contribute to myalgia through impacting muscle mitochondria function, so I upped my CoQ10 supplementation to 900mg/day. Maybe it was the different statin or the increased CoQ10 that eliminated my aches, no way to know.
So Repatha + Rosuvastatin still resulted in better results than when I was on Simvastatin alone.
Haven’t ever had my Lp(a) checked. Will do so in future.
I will check with my cardiologist on what he had to go through to get it approved. I don’t think it was difficult, but I have an appointment tomorrow, as it happens.
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Ah ok, your LDL-C and particle # make a lot more sense with the rosuvastatin on board. 900mg/day of CoQ10? That’s a hefty dose. Is it ubiquinol or ubiquinone?
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Regarding the criteria for prescribing Repatha nowadays, I saw a nurse practitioner instead of a cardiologist today, who told me that the two criteria she was aware of to successfully prescribe Repatha was either LDL of 100 or greater while on statins, or demonstrated intolerance to all types of statins. I didn’t meet either criteria. So apparently I qualified under a third option, which was probably my coronary artery calcium score of 537. She said insurance companies are becoming more and more accepting of Repatha over time.
She also suggested that I may want to stop taking Rosuvastatin, since the Repatha does an amazing job without side effects, and statins do have side effects.
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You could stop the rosuvastatin, just be prepared for your LDL particle # to go up, and given how high your numbers were to begin with, I wonder if the Repatha will be enough. I take ezetimibe along with Praluent, which helps keep my LDL/ApoB low and generally seems pretty benign when compared to statins. Of course diet can make a huge difference if you’re disciplined enough, and there are OTC supplements as discussed in other threads which may help as well.
Yes, I think I’ll try 2 months on Repatha alone (no statin), then retest. At that point, I’ll also try reducing the Repatha injections from every two weeks to every three, and retest in 2 months.
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What’s anyone’s opinion of Praluent 150mg every 4 weeks? On Amazon Praluent 2 x 150mg is $348.42, so getting the cost of a PCSK9 down to $175/mo starts to feel reasonable. I’d never qualify for PCSK9 through insurance. The lowest I can get my ApoB on statins is 70 mg/DL, but I’ve been inspired by Peter Attia’s statements that 30 should be the target if you are really committed to preventing ASCVD. I have a CAC of 0, 42 yo, my ApoB off statins is 130.
I take 10mg Crestor, and I tried 40mg but my liver values went off the chart.
I also have an (Admittedly probably false) belief that Crestor might be taking a slight edge of my memory and cognition, thus my interest in trying PCSK9. Or I could just be getting older.
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Pat25
#35
I see so many people here getting a CAC-test even at a relatively younger age: can I ask how you convince your GP/specialist to order a CAC-test? No matter how we tried, the doctor refuses to order a CAC-test for my father, even though he has many indications of vascular health problems, suboptimal lipid values and suffers from permanent atrial fibrillation.
You don’t need a prescription (US). Just call the radiology clinic and ask to self pay for a CAC without a prescription. Should be around $125
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I’ve run into the same thing.
Given that our entire medical system is now virtually 100% reactive vs proactive, unless you have the rare PCP who is both enlightened and also doesn’t have a stopwatch going on in his head to get thru your appt. as quickly as possible… you need to come to terms with the fact that you have to be your own doctor to a certain extent- to include ordering, and paying for, some of your own tests.
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José
#40
Locate another physician.
Fire the physician!
The physician works for you.
You can go online and get a prescription for CAC test.
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Does the doctor give any reasons for refusing? It’s totally non invasive with little radiation and very prognostic. I don’t get it.
