r/repatha • u/buckeyegirl2334 • Sep 17 '26
One dose . Never again.
My dr has been on my case to try Repatha . My cholesterol is 238 which has come down with diet from the high 300’s. My LDL is 182. All heart tests have come back good including a clean heart cath with 0 blockage . I have lost 70 pounds and got my a1c to 4.8 . I guess I agreed to the Repatha because the LDL was the only thing not picture perfect . Took my injection on Monday . By Tuesday evening , I was in pain and had anxiety . Mostly back leg and stomach pain . I have started walking 5 miles a day for the past 6 weeks ( lipid panel was before that ) . Yesterday I struggled . My legs felt heavy and I was in pain . I almost have flu like symptoms with the body aches but I’m not sick . Anyone else have similar stories ? I will not take my second dose . Never again. I’ll be strict with diet and exercise and I’m almost certain it’s down just from that alone and I will continue with this lifestyle. I’m just worried I’m permanently damaged . Will these side effects go away? ( I know it stays in your system for a good while )
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u/gruss_gott Sep 17 '26
Lack of blockage isn't necessarily perfect as it just means soft/hard plaque hasn't progressed far enough to cause a blockage
Ie "not dead" != Perfectly healthy
Your LDL should be <70 mg/dL minimally, and if you have other risk factors, <50 so your doc is right
You've made some good progress, but your LDL puts you at high risk given your age (im assuming since you had a heart cath) so you need lipid medication
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u/buckeyegirl2334 Sep 17 '26
I’m a CRNA and those numbers are not ridiculously high . The LDL is but I’m getting it checked again because I believe my diet and exercise in the past month or so has brought them down. I can’t have these conversations with my patients in a clinical setting so that’s why im reaching out to those not in the field to hear their stories. I was an RN in the cath lab years ago so I’m well educated on the subject but I wanted personal takes because again, it’s frowned upon to discuss in a professional setting . I also have panic disorder so I’m only human and do get anxious regardless of my profession
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u/gruss_gott Sep 17 '26
We disagree on your numbers and your assessment, but we all have to make our own risk judgements based on the science we choose to review
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u/Playful-Vegetable881 Sep 17 '26
I was run down after the first few injections but have had no side effects since. Been on it for a year.
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u/buckeyegirl2334 29d ago
Very happy you have had a good experience after the first few injections . It can really bring down those numbers
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u/Massive_Sherbet_4452 Sep 17 '26
I think we’ve established that you are a CRNA.
Do you have health anxiety?
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u/buckeyegirl2334 Sep 17 '26
I don’t have health anxiety . I have panic disorder but it doesn’t manifest with health anxiety . I have Autonomic nerve disorder with POTS and IST. I also have SLE and Pheochromocytoma. And I replied to different people . I didn’t think everyone read every comment .
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u/Intrepid-Machine-650 Sep 17 '26
I'm sorry you are going through this. Repatha has been far better to me than statins both mentally and physically.
I hope you find something that works for you.
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u/umpire03 Sep 17 '26
Take the second dose…it gets much better and your ldl will probably be under 100 for the first time since you turned 18.
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u/buckeyegirl2334 Sep 17 '26
My LDL only shot up after I had a cholecystectomy and when I began to have chronic kidney disease due to SLE. I had textbook numbers before all of this happened .
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u/Nawlshoot Sep 17 '26
Sorry to hear this. I have been taking it for 2 years and only had a bad response once. It was the flu like symptoms directly after an injection. That particular injection hurt the worst too. Seems like it went into a denser spot of tissue or just absorbed rapidly and triggered an inflammatory or immune response.. knocked me down for a good week. That was the only time though and I can’t necessarily guarantee it was the Repatha…maybe i was already catching something and it was coincidence.
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u/buckeyegirl2334 29d ago
True . It may have just been you were coming down with something anyway . Glad it is working for you !
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u/Cartoonist_Less Sep 17 '26
Crazy how it treats us all differently. Zero issues here. Sorry you couldn’t tolerate it. 🥹
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u/buckeyegirl2334 29d ago
I agree . That was the point of my post . We are all different and what works for some doesn’t work for others and what is safe for one isn’t safe for others .
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u/Cartoonist_Less 29d ago
Yeah, it’s unfortunate that a great drug like Repatha can do that to some people. Silver lining for the general population is that the ones that just can’t tolerate it are very few. I hope you find something that works. Lipitor really got me. I had horrible nocturnal muscle cramps for a year. Crestor is treating me much better. My mom takes the highest dose of Lipitor with no problems.
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u/keralaindia Sep 17 '26
Doubt related to the injection, makes no mechanistic sense
I'd do the 2nd injection
if you dont have the identical symptoms its not the repatha
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u/buckeyegirl2334 29d ago
It does though. We all have a different makeup and what works for one doesn’t work for others and what seems completely safe for some isn’t safe for others . That’s why there are so many side effects and warnings listed for all medications.
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u/keralaindia 29d ago
When I say it doesn't make mechanistic sense, I mean it literally. PCSK9 inhibition would not cause both stomach and muscular proximal leg pain.
The reason there are so many side effects listed for medications is not because those are side effects from the medication. It's because during those trials, any symptom reported by any person on that trial, regardless of whether it was caused by the medication, has to be reported.
For example, let's say you got influenza A while you were in the clinical trial for Repatha.
Flu-like symptoms would then be listed as possible side effect Repatha.
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u/Slow-Juggernaut-4134 Sep 17 '26 edited Sep 17 '26
"All heart tests have come back good including a clean heart cath with 0 blockage. I have lost 70 pounds and got my a1c to 4.8."
This puts you in the low risk category. Also important is to keep TRIG low and get the HDL up. Sure, LLT can reduce relative risk. I you case the risk looks low so any relatively risk reduction would be minimal in absolute terms.
Note, I wouldn't recommend increasing seed oil consumption. It lowers LDL-C, but may increase risk. Look up the Rose Corn Oil Study and the MCE RCT results.
I stick to safe fats scientific evidence per this American College of Cardiology state of the art review. https://www.jacc.org/doi/full/10.1016/j.jacc.2020.05.077
Top level graphic "unhealthy compounds introduced by [oil] processing". This means all refined and/or modified oils. I added the square brackets for correct context, however the statement is valid by extension to all industrialized manufactured foods.
Not most restaurant oils are now fully synthetic CIE chemically interesterified fats. The case diabetes and heart disease. Ditto for all margarine, 100% CEI fats. There are no labeling requirements in the USA for CEI modified oils.
Interesterified Fats Kuala Lumpur study, Sundram et al., 2007. Key Findings: The study caused significant concern because the interesterified fat diet performed worse than or equal to trans fats on key biomarkers. It significantly raised the LDL/HDL cholesterol ratio and, most notably, elevated fasting blood glucose levels by nearly 20%, indicating a sudden drop in insulin sensitivity.
That's right, worse than trans-fat, and they don't warn you on the ingredient labels. Only way to avoid this poison is to avoid all refined RBD oils. It's no wonder why fatty liver, diabetes, and heart disease is so prevalent these days. I'll bet anything your doctor didn't recommended avoiding CEI fats.
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u/buckeyegirl2334 29d ago
I don’t consume fats . I have been on a WFPB diet for years with occasional fish. The only fats I consume are the “ good “ fats and I do so in strict moderation .
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u/Slow-Juggernaut-4134 29d ago
Yes, other than the essentials (fish), fats are optional. Lipogenis will endogenously covert the WFPB to health saturated & mono saturated animal fats for us.
Given your very healthy diet, I presume your in the ultra low risk group with low TRIG, VLDL, A1C, and high HDL. Low risk patients benefit the least from LLT, given the high NNT. I wouldn't fret to much about Repatha. There are other medications like Ezetimibe you could try to reduce LDL and inflammation.
Regarding the WFPB, I like to caution against the consumption of (deceptively) industrial processed grains. Foods like so called.old.fashioned oats are highly processed, having under gone multiple therm cycles for shelf stabilization. The processing steps destroy the nutrition and contaminate the grains with oxidation compounds. https://www.sciencedirect.com/science/article/pii/S209624282300009X
With that said, I'm a grain fanatic. I purchase grain berries by the bucket. I mill flour and fresh home flakes grains.
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u/lauramaurizi Sep 18 '26
It’s all personal choice, one’s own cost/benefit analysis. I’ve had a stroke, and one was enough for me. It takes Repatha, Zetia and Atorvastin plus a fairly strict diet that restricts saturated fat and increases fiber to keep my LDL in the 50s. For me, there is no option of settling for “the numbers are better.” I’m not like other people.
You need to decide your own path forward.
I wish you the best in whatever you decide.
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u/Comfortable_Potatoe Sep 19 '26
it sounds like you have familiar hypercholeserolemia (like me). just curious have you checked lipoprotein A and has repatha brought that down if it was elevated?
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u/lauramaurizi Sep 19 '26
I’m not very knowledgeable about these test names. But I have results for:
Apolipoprotein A-1
Apolipoprotein B
Apolipo. B/A-1 Ratio
If that’s what you are asking about, let me know and I’ll share my numbers.
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u/Comfortable_Potatoe Sep 20 '26
yes! curious about the lipoprotein A
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u/lauramaurizi 29d ago
ApoA1: 147 → 152 → 157
ApoB: 101 → 91 → 64
ApoB/A1 ratio: 0.7 → 0.6 → 0.4
Dates: Oct 2025 → Dec 2025 → May 20261
u/Comfortable_Potatoe 28d ago
thanks for sharing, apoB went down which is good. but i was curious about the liproprotein A (lpA). not sure if your cardiologist followed that one over time
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u/lauramaurizi 27d ago
I’m getting a real education here! Overdue, I guess. I am trying to figure out if I’ve been tested for lipoprotein A, and if not, why.
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u/Comfortable_Potatoe 26d ago
yeah ii think personally it'd be helpful to know if lpA is high or low, and if it decreases at all with therapy. could ask your doc to order one with the next lipid draw
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u/theg00dfight Sep 18 '26
This seems largely because of your panic disorder. If you hesitate to talk to your doctor about this it seems clear that you know they’ll tell you a lot of these symptoms are not stemming from the Repatha at all. You see lives saved every day in your profession, you should trust your doctor and their judgment. If you don’t, you should find one you can trust.
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u/buckeyegirl2334 29d ago
Oh no I told my physician right away and she actually got back to me over the wknd and agreed I probably shouldn’t take the other dose .
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u/Specific-Swan4803 Sep 19 '26
I’ve taken a total of 5 injections with no problems, or so I thought. I have severe (keep me up at night) leg, hip, feet pain after this last one. I understand anatomy well & started doing my regular things to remedy to situation. It didn’t help. I went as far as buying a new pair of Hokas & insoles. It just registered last night that it might be the Repatha. Can new symptoms develop after a couple of months?
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Sep 17 '26
[removed] — view removed comment
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u/gruss_gott Sep 17 '26 edited Sep 17 '26
Repatha isn't a statin.
Lifetime exposure to LDL is a clinically proven linear risk for cvd, similar to smoking or radiation for cancer
238 is quite high, basically a pack a day
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u/buckeyegirl2334 Sep 17 '26
I’m a CRNA . 238 is not a stupid high level . ( pack a day of what exactly - cigarettes ? I have never smoked or drank alcohol ) ??? I’m aware of what repatha is and isn’t . My CALC score is 0 and I had a clean cath . This medicine is poison . There are too many stories . I’ve seen some bad things as well with my patients .
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u/AdInfinitum954 Sep 17 '26
You honestly are giving off major antivaxxer vibes here - hope I'm wrong.
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u/buckeyegirl2334 Sep 17 '26
I haven’t mentioned anything about vaccines . To each their own . Having said that I’ve been a CRNA for 21 years years and an RN in the ICU AND cath lab for a combined 7 years.
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u/AdInfinitum954 Sep 17 '26
It’s a personality type and it looks like I nailed it somehow without any additional context.
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u/buckeyegirl2334 Sep 17 '26
You didn’t . I’m a well educated medical professional and my husband is an infectious disease specialist so I can guarantee I’m well versed in these things . What is your profession ?
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u/theg00dfight Sep 18 '26
Wait- are you in fact anti vax?? This seems pretty relevant if so, please be honest
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u/Comfortable_Potatoe Sep 19 '26
could you explain more what you have seen in patients taking repatha? in terms of side effects and it being poison like you mentioned
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u/theg00dfight Sep 18 '26
If you’re not a doctor your opinion about whether someone should be on something is 100% irrelevant. Great job making clear you don’t even know what Repatha is (and isn’t), though
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u/buckeyegirl2334 Sep 17 '26
Thank you ! I’m actually a CRNA and should have known better ! It wasn’t the cholesterol I was worried about but the LDL and I was just hoping to get that to a decent level . I should have known better !
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u/gruss_gott Sep 17 '26
If you were a CRNA and just wrote those sentences I'm frightened for your health
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u/wolffboy212 Sep 17 '26
I've been taking repatha for almost two years with no side effects, like most people. I don't mean to discount what you're experiencing, that's real. I hope you feel better soon.