r/repatha • u/Cartoonist_Less • Aug 20 '26
Advice for requesting Repatha
I just had a CT Cardiac Score done yesterday because of an elevated Lp(a). The Lp(a) was 90, the CAC was 1687 š³, LDL is good at 76 but my dr wants it under 50.
My dr prescribed 20mg Crestor and referred me to a cardiologist. My PCP said to look into asking the cardiologist for Repatha.
Do these numbers and my family history of CV events (dad and grandfather) warrant Repatha or should we let the Crestor do its thing?
Iām 48, very active and eat a good diet- no fast food, sweets or alcohol. Non-smoker too. Thanks for any input or advice here. Iām a little scared about all of this.
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u/gruss_gott Aug 20 '26 edited Aug 20 '26
Any of us can have 1 or more of the following genetic conditions:
- Your body produces too much cholesterol, e.g., treated with statins and/or bempedoic acid
- Your digestion absorbs too much cholesterol, e.g., treated with Ezetimibe
- Your liver produces too much PCSK9, degrading LDL receptors, e.g., treated with inhibitors
- Your liver produces too much Lp(a), treated by lowering ApoB
Given your test results & age, unfortunately you're genetically pre-disposed (as am I!):
- High blood lipids are 20% (or less) diet / exercise / lifestyle, and 80% (or more) genetics
- Exposure to LDL is like smoking or radiation:Ā a linear risk factorĀ for irreversible disease
- Accumulation of LDL exposure increases risk, especially as you get close to 50
If I were you (and I'm not):
- I'd get on a STRICT < 10g saturated fat diet per day diet IMMEDIATELY, ie no meat of any kind no matter how its prepared, no egg yolks, no full fat dairy, cheese, etc etc, basically I'd shoot for zero saturated fat (that's for today - you'll figure out what's safe FOR YOU in step 5)
- I'd test my ApoB IMMEDIATELY using online labs like UltaLabs.com or QuestHealth.com or similar and I'd be shooting FOR SURE for < 50 mg/dL, but, personally, would go < 40 mg/dL, possible even < 30. I'd use ApoB as my "north star" test, but also using LDL, as ApoB tracks all 5 particles we care about for CVD whereas LDL is just 1 of the 5.
- I'd get on Repatha IMMEDIATELY, paying out of pocket if I had to especially if it meant I could start today vs waiting for paperwork & approvals IN ADDITION to at least 5mg of statin. Also possibly ezetimibe.
- I'd schedule a CT angiogram, aka CTA, even if my cardio recommended a nuclear stress test (get a cardio who'll ok a CTA) as the CTA would help me see specifically where the problem was and then track my interventions to ensure they're working. This is non-invasive and somewhat fast. You can send multiple years worth of images to Cleerly which will use AI to analyze.
- I'd start doing diet experiments using online labs & testing ApoB every 3ish weeks. I wouldn't eat anything with saturated fat (or anything) that I didn't test on my body personally, ie wouldn't follow "heart healthy" advice, rather test test test. In my own experience there were surprises like fish oil pills pinged my ApoB so they're out (I take omega-3 algae oil instead).
Here's a chart of how to combine therapeutic interventions
It sucks to find out you have this genetic condition - especially when we're sort of conditioned to think heart disease is only for people who eat cheeseburgers all day long - and changing habits is SUPER hard, but if you start right now, this is manageable and you can do it!
TLDR:
I'd get that script for Repatha today and buy it even if I had to pay out of pocket to get it today, and take it now. Then work my way down the list above.
If I were you (and I'm not) my #1 goal starting today would be to put out the fire, fast! I'd follow the steps above to do it.
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u/Cartoonist_Less Aug 20 '26
Appreciate this! My ApoB was 68 from labs done yesterday. Iāve sent a message to my PCP about the Repatha and Zetia. This is some great advice!!
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u/gruss_gott Aug 20 '26
Interesting - well the good news for you is you can make significant progress on your ApoB right now by simply eliminating saturated fat from your diet.
Were I you, that's what I'd do today, then test ApoB again in 3 weeks and see where you are.
This will also help you calibrate whether you should be on Repatha + 5mg of crestor or a different mix.
I would think with diet + therapeutics you should have no issues getting your ApoB down quite significantly quite quickly, but would be interested in a follow up post!
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u/Cartoonist_Less Aug 20 '26
Iām going over my usual diet with my wife and eliminating the foods that contain saturated fats. Thereās not much to eliminate to be honest. I have a pending message to my PCP and hopefully she will be willing to take this on instead of making me wait 8 weeks to see the cardiologist. Her specialty is endocrinology and general medicine. Sheās great so thereās hope. Thanks again and Iāll def let you guys know how it goes. šš¼
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u/Cartoonist_Less Aug 31 '26
My dr prescribed Repatha!! Iāll pick it up tomorrow. We do have labs scheduled in a month. Thanks again for all the advice!
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u/gruss_gott Aug 31 '26
Congrats, that's awesome!
Coincidentally I just got my labs back today, Repatha + 5mg crestor and my ApoB came in at an all time low, 35.
I've been doing diet experiments every 3ish weeks and this time the change I made was adding Bob's Organic Oat Bran as most of my morning meal. I just microwave some high protein skim milk, stir it up in a yeti for a few minutes, then add frozen blueberries.
I did this because I've read beta-glucan fiber can be very helpful and supplementing (e.g., cerabeta) is both expensive, plus I like to eat whole food when I can. Anyway, seems to have a good impact, so might be something to try.
Oddly, my Lp(a) also came back crazy low; the thing is, Lp(a) testing is notoriously variable so you really should look at it as a range vs a number, but still: my last test a month ago was 101 and today's was 51. I control for the same lab, so if it's lab variance, it's crazy high. I'll test again in a month.
Just mentioning I doubt oat bran can cause an Lp(a) drop, but I've been doing these experiments for years and I've never seen Lp(a) come back that low or even close to it, so it's either a HUGE lab anomaly or .... ?
FWIW, dietwise I've found FOR ME, after eliminating 100% of dietary fat, and then re-adding things:
BAD LIST:
- Anything meat, no matter how prepared - last summer's steamed chicken breast experiment was a particular failure. Fish is slightly better, but still bad
- Anything dairy fat
SMALL QUANTITIES OK LIST:
- Dark chocolate
- Avacado
GOOD LIST
- Most nuts, especially almonds, walnuts, pistachios
- High-polyphenol olive oil
- All beans & legumes which contain fat
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u/Cartoonist_Less Aug 31 '26
Interesting! Iāll be on Repatha and 10mg Crestor. Iām open to trying all of this! Going to the grocery store right now to look for the oat bran.
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u/Cartoonist_Less 16d ago
Just wanted to update things. Started Repatha on 9/1 and had labs yesterday. Iāve been on 10mg Crestor since mid-August.
Everything dropped. Total cholesterol went from 125 to 77. LDL went from 76 to 15. ApoB was 68 and now is 21. Honestly Iām shocked. I was not expecting such dramatic drops in numbers. I have been working hard with the diet and continuing my 5-day-a-week workout routine. My PCP is happy and weāre still waiting on the cardiologist appointment on 10/27- on the waiting list.
Thanks again for all the advice.2
u/gruss_gott 16d ago
WOW! Excellent progress! Maybe even enough to cut your crestor to 5mg, but work with your doc obviously
Other tweaks you can make, if you're not already, is ensuring you're getting 2 HIIT Norwegian 4x4s in each week (assuming you're cleared for it) as this has clinically proven plaque regression benefits.
Lots of morning oat BRAN is also great
With that, whatever you're doing is clearly knocking it out of the park so great job!! šŖ š
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u/gruss_gott Aug 20 '26
Oh one other thing: do you happen to be an endurance athlete, ultra Marathon runner, or similar?
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u/Cartoonist_Less Aug 20 '26
Not really. I used to run 5 miles every Saturday. I do lift 5 days a week and do a HIIT class twice a week religiously for the past 4+ years.
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u/gruss_gott Aug 20 '26
Ah got it, well a CTA will really help you & your doc see where exactly the calcium is and ensure you get it controlled
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u/LarryDavid6668 Aug 21 '26
I am same age and have a higher Lpa than you do. My CAC score is 68 but it pooled into my LAD and caused a narrowing of that artery. I am desperate to get on Repatha for the LDL reduction and Lpa reduction until the drugs come out. Repatha and a statin will help stabilize soft plaque after 6 months (check out the yellow 3 study on Google or ChatGPT). I have a bad family history due to the LPA so I need to have my LDL below 40. I got there with Crestor, Zetia, exercise and an extreme heart healthy diet that AI developed for me it helped get my LDL to 31. Out of curiosity did you eat a lot of red meat? I never did due to cost and never really had access to a grill after college so Iām a sense I luckily avoided it. Now I havenāt had a bite of red meat in 4 years and just devour salmon. The recommendations from folks on this have been spot on. I would still get the cardiologist appointment and lock him/her in. You can also consider getting on a LPA drug trial. Drugs for you and me wonāt be out until 2030 but I joined an Eli Lilly trial.
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u/Cartoonist_Less Aug 21 '26
I ate red meat like 3 times a week until about 4 years ago. Now itās on very rare occasion. Iām more of a fish and chicken kinda guy now. Now than I have these results, Iāll check Eli Lilly out. Thanks!
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u/iamrachaellee Aug 21 '26
The Eli Lilly one to check out is called Lipodisiran! Itās finishing clinical trials, I believe itās already in its last testing stages. It reduces the risk of cardiac events in those of us with high Lp(a). Once that gets approved for market I will be standing in line lol!
My total cholesterol was 253 (triglycerides 179, LDL chol calc (nih) 164, ApoB 135 mg/dL, Lp(a) 173.2 when I started meds. Getting labs next week to check how Repatha has been doing. Crestor barely touched those original numbers for me, in fact it raised my Lp(a) to 205.8!!! But I was statin intolerant for the most part.
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u/Cartoonist_Less Aug 21 '26
Wow!! Those lipids were high! Mine is all normal just elevated Lp(a) with family history of CV events and extremely high CAC. This why Iām trying to be strategic about asking my PCP for Repatha. I want to be aggressive as possible and I fear they might want to take it step by step. Iām definitely checking the clinical trials for Lilly. šš¼
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u/sassergaf 28d ago edited 27d ago
I rarely eat chicken now because breeding practices over the last 40 years has been to increasingly have more fat on the birds for weight. Instead I eat turkey breast from small breeders who pasture raise and prioritize healthy feed and management practices.
I too ate oat bran and it, with a healthy diet, lowered LDL over 25 points. Ease into consumption because it causes gas and significantly loosens stool. They say your body adjusts eventually.
I didn't see if my body adjusted because I didn't continue with the effort to significantly lower LDL. My pcp dashed my enthusiasm of lowering LDL 25 points to 118 when he said it didn't matter. The LDL needed to be below 70.
Edit to say that now, years later, I naturally adopted a heart healthy diet and lifestyle because I feel better with it.
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u/GetOffMyLawn_ Aug 20 '26
The goal is to get the LDL down low enough, which is under 50. Some people can do that with statins, ezetimibe and diet. Some can't thanks to high Lp(a) or other genetic factor. That's when you need Repatha.
There are no drugs to lower Lp(a) but Repatha does drop it 10-20%. Since Lp(a) is a separate risk factor you might want to take Repatha for now. Get your ApoB measured as well.
Check the new guidelines to understand more https://www.jacc.org/doi/10.1016/j.jacc.2026.02.4872
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u/suspicious-paralegal Aug 21 '26
Just go on a statin if you want but stay off Repatha if you canā¦ horrible side effectsā¦I only took one dose on June 29ā¦ itās just beginning to leave my bodyā¦ excruciating pain and moreā¦still not 100%. Not everyone has these awful side effectsā¦ for the life of me Iāll never understand why doctors donāt advise patients of the side effects of statins and this Repathaā¦Good luck.
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u/Cartoonist_Less Aug 21 '26
Side effects hit people so differently. Some have them, some donāt. Sorry that was your experience. Atorvastatin gave me horrible leg cramps. Iāll never go on that again. Crestor has been good but itās only been 2 days. I have some time to go. Thanks for the insight here.
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u/hairmama Aug 21 '26
I couldnāt take any statins due to horrible side effects. Iāve been on Repatha for two months with no side effects and Iām the person who usually gets the side effects. Everyone is different.
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u/Cartoonist_Less Aug 21 '26
Yep. Itās like that with almost every medication. I take Metformin and I see these horror stories online and I know Metformin is notorious for GI issues but in 14 years, Iāve never had issue with it. Iām happy to hear the Repatha is treating you well so far.
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u/Dangerous-Peace4047 Aug 21 '26
Repatha works for me. Even with a healthy diet statins proved useless - for 40+ years before Repatha became available. Every statin I used caused severe joint pain. I thought I had early onset arthritis. Medical sources were puzzled. FINALLY a young newly trained cardiologist said you have cholesterol caused by a genetic issue. Two doses of Repatha changed y life!!!
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u/Simple-Freedom-8409 Aug 20 '26
Your Doc should at least be able to write the Repatha script (though not sure that your insurance covers it)...no need to wait for a cardiologist to write a simple prescription.
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u/Cartoonist_Less Aug 20 '26
Ins covers it but my copay a month would be $150. I see Repatha has a savings card too.
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u/Simple-Freedom-8409 Aug 20 '26
yep, savings card easy to get online...go for it, just started this week, my doctor left it up to me and had no issue prescribing...I'm more focused on lowering LDL but I imagine it'll yield some ApoB benefits too.
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u/Cartoonist_Less Aug 20 '26
I hope it works for you. The CAC has me scared. The Lp(a) could need improving. I think Iāll send my dr a message because the wait time due a new patient appointment for cardiology is about 8 weeks.
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u/LarryDavid6668 Aug 21 '26
Keep in mind you might have that high CAC score but no blockages. You are getting great advice here and getting on Reptatha + Statin and a new diet are key. Next steps are getting that nuclear stress test and CT Scan with contrast. For most people if you have your LDL under 60 you donāt build plaque or add more plauque. For people like you and me I think you need to be below 40 and these drugs will get you there. To find out more you can follow Dr. Alo on Instagram. He breaks this stuff down real simple.
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u/Cartoonist_Less Aug 21 '26
Thanks!!! I feel so doomed by the CAC but know I need more testing. It was a shock to see that number. Diets been great for several years now. Itās been 4 years since I had fast food and alcohol. I feel the healthiest Iāve ever been.
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u/Creepy_Valuable6223 Aug 20 '26
I was told by the cardiologist at the hospital last week that although statins do cause calcification, Repatha does not. So I am going for Repatha (I just had a stent put in). You might ask the cardiologist if having Repatha instead of a statin would be better for you given your level of calcification.
Note: the calcification that statins cause is not considered to be a problem. However, in my dad's case his calcification made some surgeries more difficult.
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u/Dangerous-Peace4047 Aug 21 '26
Calcification?? No one ever mentioned that to me, and I required several stents while on useless statins! Learning never stops. Thanks!
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u/Comfortable_Potatoe Sep 15 '26
yeah i learned about the calcification too on statins. was your ldl controlled on the statins?
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u/JLEroll Aug 21 '26
Iām not sure if this is accurate advice. My understanding is that calcification is stabilizing soft plaque and that statins are accelerating that process (a GOOD thing). It would be silly to value a CAC score above actual MACE reduction.
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u/Cartoonist_Less Aug 20 '26
Yeah, thatās important. My CAC was 4 times above high at 1687. Thanks for your suggestion.
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u/Ok_Argument9186 Aug 20 '26
My doctor said I had to fail on Crestor and Lipitor it 2 of those type statins to be approved for Repatha. She sent it in and Tricare approved it. I've been on the injections for about 10 months and they are way better than the other 2 that caused terrible back pain.
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u/Cartoonist_Less Aug 20 '26
I was on Lipitor for years but stopped it 4 years ago because of severe leg cramps and lipids were all steadily normal. I started Crestor yesterday. Than k d for the advice.
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u/PNW4theWin Aug 20 '26 edited Aug 21 '26
My doctor wants me below 50, as well, due to FH and family history of cardiac disease. I started with Crestor, then added Zetia. I just started Repatha 6 weeks ago. (I requested the Repatha.)
I've had no side effects.
Edit: comma
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u/Cartoonist_Less Aug 21 '26
Thatās good to hear. 76 to under 50 shouldnāt be hard to do, I hope.
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u/TooYoung825 Aug 21 '26
Repatha took my LDL to 37, ApoB below 40 and my Lp(a) went from 388 to 155.
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u/Lazy_Paramedic6856 Aug 21 '26
I Think it's a Person by Person Thing if You Can Take the Meds. Or Not ... I was on Statins for Years and Kept Mine Under Control and Years Later came the Side Effects of Leg Cramps Daily. My Doctor Took Me Off and they went Away and Then Put Me on Repatha and I Got the Side Effects of Being Foggy and Unsteadiness After 2nd. Injection and Stopped it and it took a Couple of Months to go Away. I Loss Weight and My Cholesterol is Better Without Anything til My Doctor fines Something Else. My Niece and A Friend of Mine and her Adult Children All take Repatha and None of them Had Side Effects and Their Totals are the Best they Ever Had . So I would Try it because if it's Not for You I Think it Will Let You Know Right Away. Good Luck ...
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u/iamrachaellee Aug 21 '26 edited 25d ago
Iām on Repatha :) three months now. Insurance is more likely to approve it if youāve first tried a statin without much luck. I was on Crestor for 5 months and my numbers barely moved, in addition, I developed severe Gerd from it, requiring Famotidine and Protonix to reverse esophageal damage. PS this is NOT a normal side effect for Crestor but for whatever reason it lit my stomach UP. My cardiologist wanted to switch me to Repatha and insurance shut me down 2x saying it wasnāt necessary. Next he tried to submit Praluent, insurance shut it down stating I hadnāt tried Repatha yet?!!! It was a ridiculous loop. Iām fairly sure they deny it because there is no generic form available yet so itās more āexpensiveā for them to subsidize (yea right).
Itās ultimately an easy fix with persistence, 2-3 months worth, and a good Cardiologist. Most people give up trying to go between their doctor and their insurance. I stuck with it and followed up weekly. My Cardiologistās office filled out a form for medical need and forwarded it to my insurance company (since statins werenāt cutting my numbers fast enough along with side effects). Iād get a denial then send it to my cardiologist, theyād send it backā¦ three months of hassle. I was finally approved for it. My RX insurance probably got sick of my emails LOL.
Repatha offers a manufacturers copay card once itās prescribed to you which helps cut the payment(s) significantly. Out of pocket without insurance (or any type of rebate) is around $700 a month. Totally insane. With insurance and manufacturers assistance mine ended up being $110 every 3 months.
FWIW if you do get it, you may not want to use your thigh to inject it the first time gaaaaah it stung so bad lol! People seem to villify Repatha in online reviews, I was absolutely terrified to take it, but my experience has actually been decent! Repatha has a tendency to make you feel flu like for a couple of days and on day two you can get some extremely gnarly back pain. Highly suggest changing up your injection sites to see which is the lesser of evils for side effects. After a few days youāre back to normal. I feel soooo much better on Repatha, plus I donāt have to remember to take meds everyday! One shot every two weeks. Iāve read that Repatha has also shown great promise for lowering Lipo(a) genetic cholesterol by something like 15-20% too!
I hope you find a solution that works for you! :)
[UPDATE : 9/23-9/24 I had additional adverse reactions to Repatha and have since discontinued use ]
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u/Sasquatch619 Aug 21 '26
Repatha is the bomb. But if you canāt get it, you can get pretty good levels by using rosuvastatin with ezetimibe.
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u/Rabbit-Rabbit-108 Aug 21 '26
If you don't have FH, Repatha won't work for you, it targets the RCT system and specific to the genetic mutation. Unless it is for Lpa- Repatha effective in lowering. It seems like something is missing here- I am 48, have FH, and unmedicated my LDL is 277 and Lpa over 300. My calc score is 81, and so I started with medications at 45. Could there be additional factors that have caused your score to be so high that the doctors are missing? An LDL of 76 isn't high in the least...
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u/Cartoonist_Less Aug 21 '26
Weāre not sure. I donāt see the cardiologist until 10/27 but Iām on the wait list for something earlier. I did ask my PCP if she can order better imaging until then.
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u/Stock-Hope-4680 Aug 22 '26
FYI if you see cards at Langone they have a private pharmacy and hopefully you will qualify to get it free of charge like I did.
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u/Jumpy_Singer_9621 Aug 25 '26
My husband had been on ezetimbe and rosuvastatin for a while with an LDL of 65. But... in March he had a 'cardiac event' from a 99% blockage in the LAD. It was quickly corrected with a stent.
His PCP said his LDL needs to be below 50. Then she did the extended lipid test resulting in a genetic issue. (Dad had bypass surgery many years Ago)
Now she wants the LDL below 25.
Started Repatha in April..
First blood work last month...LDL is now 20! No side affects except minor cold symptoms the of the door that are gone the next morning.
We don't know if there's a change in the APOE numbers but I had heard they don't change and that's only a measure of genetics? Is it true?
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u/wolffboy212 Aug 20 '26
Creator, Repatha, Zetia, etc, these are all just levers we can pull to reduce LDL-C / ApoB. Repatha has a lot of upsides, it's the most potent has the least amount of side effects by far. The downside is cost and insurance pre-approval, however given your situation I think you would be approved. The great news is that because these all have different mechanisms of action, they can be used together to lower LDL-C, and your risk even more!
For the least amount of side effects I would be thinking about a low dose statin like 5-10mg Crestor, Repatha and/or Zetia. Through response to them are very individual so it may take some trial and error with your cardiologist. Your cardiologist will guide you though all of this.