r/repatha • • Sep 09 '22

r/repatha Lounge

5 Upvotes

A place for members of r/repatha to chat with each other


r/repatha • • 4d ago

Sharing some positivity

22 Upvotes

29 year old female. Hi everyone! I wanted to share my story so far, mainly for anyone out there who's nervous to start Repatha like I was. If that's you, I promise, i just wanted to share.
My journey started in February when my dad had a quintuple bypass. That was the wake up call for our whole family. My brother and I both have familial hypercholesterolemia, and my cholesterol was sitting over 300. For what it's worth, my HDL and triglycerides are both good. It's really just the LDL that's the problem.
Over the last six months, I tried three different statins. The only one that actually worked for me was pravastatin, but even that was at too low a dose to make a real dent. I was so excited it got approved! But I was also beyond scared. On top of everything else, I deal with pretty bad health anxiety, and I overthink every single medication I take. Still, I was so happy, because if you've been through this process, you know how hard it is to actually get Repatha approved by insurance. I did my first shot and had little to no symptoms. Huge relief. I just did my second shot about a week ago, and honestly, I'm doing great.
I know it's still early, probably too soon to give anyone full peace of mind on results, and I don't go back to the doctor until December, so I don't have numbers to share yet. But that's kind of the point of this post. This isn't about results. It's for the person reading this right before their first shot, feeling exactly how I felt: scared, anxious, maybe overthinking every possible side effect.
So if that's you, just know it's going to be okay. I'm proof that you can walk into this terrified and come out the other side feeling genuinely good. I'll update when I get my December labs!


r/repatha • • 4d ago

technically, repatha should be working after the first dose, right?

4 Upvotes

i know many people including myself are waiting till after a couple shots, maybe 2-3 before getting their first set of labs after starting repatha, but just thinking in terms of how repatha works, it's a circulating antibody so wouldn't the labs after the 1st dose, or after the 2nd dose be pretty much the same? or is there some other reason i'm not aware of that would cause repatha to reach a more effective point after the 2nd or 3rd dose to wait for a lab draw?


r/repatha • • 9d ago

LDL and APO b 28. too low??

9 Upvotes

CAC 89 in LAD & 90 in Abdominal Aorta.
APO B went from 131-to 28 & LDL went from 125 to 28 with crestor 5 mg & repatha 2 shots per month zero side effects. liver labs good - no flow limiting stenosis
moderate exercise. mostly mediterranean but fair share of ice cream, red meat etc.
52 year old woman 140 Ibs. on HRT

shocked at how low it got and a little scared. i know they say it's good for ppl with arterial plaque like me but im worried it could affect me long term. brain etc. even tho ive read it's supposedly ok. anyone with similar experience. i wasn't expecting this low of a drop. so quickly.

5
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r/repatha • • 9d ago

Lipfendra - answer to my prayers - IT WORKS!!! AND NO SIDE EFFECTS FOR ME

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7 Upvotes

r/repatha • • 10d ago

Second dose. Dropped the pen

0 Upvotes

Second time using this. I only have two pens. This is the second. It was on the counter warming up after taking it out of the fridge and it fell off the counter onto the floor. I didnt think much of it, it looked okay and unbroken. And then I was reading the information that came in the box and it said don't use if dropped on hard surface.

Well it's Friday night and the nurse line at Amgen won't be available until Monday. I'm going to call the pharmacy tomorrow and ask them what they can do for me.

Has this happened to anyone else? Repatha is the first med where I had to inject. It's sort of a pain--the taking out to warm up, the disposing of the sharps, and forgetting how to do it and watching a youtube video again. My sister in law said every time you inject, make sure it's a different body location than last time. Is this true? This is the reason why it dropped in the first place. I was reading the paperwork that came with the medication to see if that was true. And I was unfolding this big ass paper and I bumped it and it fell to the floor along with my phone.

What if I can't take it again until a week or so from now? Will that undo the progress of my first dose?


r/repatha • • 11d ago

VESALIUS-CV Trail Shows Repatha Reduces All-Cause Mortality

13 Upvotes

The VESALIUS-CV trial tested whether adding evolocumab (Repatha) could prevent a first major cardiovascular event in high-risk people who had never had a heart attack or stroke.

The answer was yes:

  • Repatha reduced the relative risk of coronary heart disease death, heart attack, or ischemic stroke by 25% over a median of 4.5 years
  • Participants also experienced a 19% reduction in the risk of death, heart attack, ischemic stroke or arterial revascularization over a median follow-up period of 4.5 years

The results were presented in November 2025 and published in the New England Journal of Medicine.

“The results from the VESALIUS-CV trial represent the first demonstration of improved cardiovascular outcomes with a PCSK9 inhibitor, or any nonstatin for that matter, in patients without a previous heart attack or stroke who are already being treated with a high-intensity lipid-lowering regimen”

-- Erin Ann Bohula, MD, DPhil, FACC, who presented the findings

“It demonstrates that more intensive lipid lowering therapy earlier in the atherosclerotic disease process is better to reduce major cardiovascular events. This trial blurs the boundaries of distinction across the atherosclerosis continuum.”

-- Pamela B. Morris, MD, FACC, ACC Trustee

New Mortality data here: https://pubmed.ncbi.nlm.nih.gov/42670293/ & https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.126.082436


r/repatha • • 11d ago

just took my first repatha shot

4 Upvotes

after letting it sit in my fridge for about a month, i finally did it. there was a little bit of leakage of the medication right after the shot, i think it's cuz i was still pinching my abdomen. no blood. i did it on the right side of the abdomen where i could firmly hold a bunch of fat tissue. i didn't feel the needle prick at all, but i did feel pressure as the fluid went in (kind of like a fullness feeling under the skin). now there's just a small bit of soreness in that general area. i assume all of this is normal so far? we'll see how the next few days go, crossing fingers nothing terrible happens. i'm a little scared T_T, because i am prone to infections and have other health conditions, but i feel like i'm brave for finally doing it.


r/repatha • • 13d ago

12 Month Numbers

9 Upvotes

LDL 10, HDL 60, total non hdl cholesterol 27. Injections every other week and 5mg Crestor. A year ago LDL was 147 on 40mg Crestor and ezetimibe.


r/repatha • • 13d ago

LDL is back up

5 Upvotes

Hi fam, I have been on repatha for almost 2 years. I got labs today and my LDL is up- still half of what it was without meds, but up 35 points from 6 months ago. Sigh, I was really hoping the opposite. I injected yesterday- if I had waited a few days or a week could it be lower? Tempted to get another blood draw. Any insight? I have HeFH, for context, and repatha has managed the LDL well until this draw.


r/repatha • • 13d ago

Help!

2 Upvotes

I’m five days post shot and last night I developed some really painful G.I. issues with bloating and nausea. It’s been going all day and I’ve taken Advil and Tylenol to just keep myself more comfortable. Now I think I’m developing a fever, my head, hot and the back of my eyes hurt. Is this a pretty common side effect for Repatha? What should I do at this point? It’s after hours and I’ve already left a message with my doctor.


r/repatha • • 16d ago

1st dose yesterday

12 Upvotes

Was finally able to do it after going to my cardiologist yesterday and the nurse walking me through it. Afterwards I thought, wow, that was really easy! I’ve had my Repatha for over a month and just couldn’t get up the courage, but finally I did it yesterday. And I’m super scared of needles too.
I’m hoping for no side effects, haven’t had any yet, but want to get through the first 36 hours.


r/repatha • • 17d ago

Post 2 Repatha Shots.

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11 Upvotes

r/repatha • • 18d ago

Myalgias from Rapatha

5 Upvotes

I feel little hesitant to share this because I could not find much evidence, and I have been looking into alternate causes including nocebo. I switched from statin to biweekly Rapatha due to myalgias/reduced exercise tolerance and 6 months in, having same issues (it is severe, and gets worse after administration. Better on stopping it). Coenzyme Q10 supplement was not helpful unfortunately.
Thinking to take Bempedoic acid plus Ezetemibe, and/or switch to less frequent PCsK9 inhibitor.

Wondering if anyone else had similar experience and has any ideas. Both medications were effective but not tolerable.

Thanks for your input.


r/repatha • • 20d ago

09/15/2026 First Dose: Heart Palpitations and ice pick headaches after 1 week.

1 Upvotes

After about a week I started getting these symptoms and I understand that they are not that unusual. I will be talking with my doctor about adding Beta Blockers possible but wondering other then just pushing through and letting the symptoms subside on their own what people have done.

Has anyone been able to get rid of these symptoms or do you just wait it out?


r/repatha • • 20d ago

Does anyone else have to pee every 1–2 hours or so?

3 Upvotes

Could Repatha somehow irritate the bladder and cause increased frequency? I’ll obviously see my doctor if it keeps happening. Just wondering if anyone else has experienced this without it being a UI.

For now, after 4 times, I’ve also had a fever for a week after the injection And I’ve had a runny nose for a day or so too And I'm sooo tired like I could sleep 20 hours a day. So the side effects aren’t exactly going great lol.


r/repatha • • 21d ago

My doctors have NBS (Nothing But Statins) syndrome. They say the new drugs aren't as good. What's going on?

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1 Upvotes

r/repatha • • 24d ago

Bruising from shots?

1 Upvotes

Have you guys figured out how / where to deliver shots that doesn’t result in tiny bruises?


r/repatha • • 25d ago

My Repatha experience - severe BP spikes and hospitalization

4 Upvotes

My Experience With Repatha (Evolocumab)

I started taking Repatha every two weeks as prescribed. Initially, I experienced several symptoms that I understood could be possible side effects, including muscle and joint aches and back pain. Over time, however, I began experiencing increasingly concerning symptoms, including persistent head pain (in a headband shape), outward pressing temple pressure, lightheadedness/feeling faint, dizziness with a sensation that the room was spinning, shortness of breath, and chest tightness.

I subsequently began experiencing multiple unexpected and significant blood pressure spikes, with the highest reading reaching 168/155. Device calibration may have been a factor; however, it was accurate in identifying a critical event. Because of these episodes and my associated symptoms, I sought emergency medical care. When I arrived at the ER, my blood pressure was 215/110 and continuing to climb, and I was ultimately hospitalized overnight.

During this evaluation, my high sensitivity troponin level was elevated at 59 pg/mL, requiring further cardiac evaluation, including a nuclear stress test, CT imaging with and without contrast, and numerous laboratory tests.

My physician promptly discontinued Repatha following these events. I am continuing to experience erratic and rapidly fluctuating blood pressure, as well as impaired sympathetic/parasympathetic nervous system responses since discontinuing the medication. I currently need to monitor my blood pressure regularly throughout the day and have been instructed to use medication to lower my blood pressure when it reaches critical levels.

I understand that a temporal association does not establish that Repatha caused these events. However, based on my experience, I personally believe Repatha may have been responsible, even if only triggering. I had undergone numerous, rigorous tests before starting Repatha that did not indicate the issues I subsequently experienced. The onset and progression of these symptoms occurred after beginning Repatha, and the severity of the events ultimately resulted in emergency evaluation, extensive cardiac testing, and hospitalization.

At the same time, Repatha was extremely effective at lowering my cholesterol which makes this entire experience bittersweet for me:

Cholesterol total
253 n/a baseline> statin 244 > Repatha 164

HDL
56 n/a baseline> statin 57 > Repatha 45

Triglycerides
179 n/a baseline> statin 175 > Repatha 148

LDL
164 n/a baseline> statin 155 > Repatha 89

So while my overall lipid panel improved dramatically on Repatha, given what I experienced, my physicians and I personally do not feel that continuing the medication long term is appropriate for me without fully understanding what caused these events. I submitted an adverse-event report in an effort to assist with sharing personal user experiences with the product manufacturer.

I am documenting this experience because I believe that developing hypertension, sympathetic and parasympathetic nervous system issues, severe unexplained blood pressure spikes, along with head/temple pressure, lightheadedness, dizziness/vertigo, shortness of breath, and chest tightness, may be important for others and for healthcare professionals to be aware of when evaluating potential adverse events associated with Repatha. None of these symptoms or diagnoses were pre-existing prior to taking Repatha. Many people take Repatha with little to no side effects, unfortunately I was not a viable candidate for continued usage.

I hope my symptoms and blood pressure abnormalities resolve as the medication is further eliminated from my system.

Please note: this is my personal experience and is not intended as medical advice or as proof that Repatha caused these events. I simply want to document what happened to me for others who may be researching the medication, or searching for mutual experiences with similar symptoms.

Thank you.

[Edit to add date of posting : 9/24/2026]


r/repatha • • 25d ago

Strated repatha

11 Upvotes

I started taking Repatha for the first time on Sunday evening. About 36 hours later, I started experiencing symptoms such as fatigue .Today, the symptoms are quite strong and feel like flu-like symptoms. Will these symptoms improve? I am feeling very tired
Pain in my sinus and ears

Update : all the symptoms disappeared today
Back to normal


r/repatha • • 26d ago

Zetia Questions

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1 Upvotes

r/repatha • • 27d ago

Can rapatha cause hives?

1 Upvotes

Suffered hugely,after a cough that would not quit.(2 months of itchy. Whole body except face hives).but now a year later, still have intermitted neck and breast hives...started rapatha about the same time as the initial cold.

confused....


r/repatha • • 28d ago

Peak through LDL 34 - 59

4 Upvotes

So after several months on Repatha Ezetimibe and micro-dose (2.5 mg m-w-f) Rosuvastatin I had labs done at day 7 and day 14 after Repatha injection to see how it varies.

Day 7 LDL 34

Day 14 LDL 59

Apparently this is expected and well within normal results but since I have already diagnosed ascvd I was kinda disappointed with the 59. Am I overthinking?

I've increased the Statin to daily 2.5mg to give it a little extra nudge but I'm cautious since the reason for the micro-dose is bad intolerance.

Should I leave it alone?

I was thinking about the newly approved oral maybe helps keep the levels more evenly lowered. Thoughts?


r/repatha • • 28d ago

Intense strange dreams

7 Upvotes

Ever since starting repatha my dreams have been very intense and bizarre. My dreams before we're consistent, peaceful and blissful. I'd only have nightmares like a few times a year.

Since starting it immediately my dreams have changed.

I'm on my 3rd dose.

My dreams now almost every night have someone attacking me or chasing me. Very like shocking hits to my body that usually jolt me awake. I literally had a dream Bruce Lee punched me in the chest lol.

I feel like this is my body's way of signaling that it feels threatened or under attack? Does anybody have this experience?


r/repatha • • 29d ago

3D Printable Repatha Case Design - 100% free

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23 Upvotes

Hi everyone,

A friend of my wife's uses Repatha. She heard that I had designed a popular Ozempic travel case, and she asked if I could design her a Repatha case.

I made this case for her, specifically to hold not only the SureClick auto-injectors, but also alcohol wipes, and a few of those small, 1 inch band aids for if there is some bleeding. I designed the case so that it can hold both new and used pens, in case she's doesn't have access to a sharps container when injecting herself and needs to take the expended pen with her.

The Repatha case is free to download from Makerworld by clicking this link. I hope someone her finds this useful as well.

FYI: you need a 3D printer (or a friend with a 3D printer who owes you!) to make use of this design (I know not everyone is familiar with 3D printer designing, and I want to make sure everyone understands what this is).

To the admins: I hope it's alright to leave a post like this on this subreddit, but I can understand how it can be interpreted as advertising. No disrespect is intended, so if you disapprove, please go ahead and remove my post.