Started Repatha - Side Effects

@llynch and @euser I have been trying to lower my cholesterol for years, finally getting it done. Niacin, statins, bile acid sequestrants, ezetimibe, Repatha and Praluent, Bempodoic acid, inclisiran injections, and even every other week lipid apheresis (a blood treatment to physically remove cholesterol). There are a variety of options available today and the key is to find a doctor you can work with to figure out what you’re unique problem is. A standard lipid panel won’t tell you. There are other markers that dig into the weeds. Cholesterol accumulates for a variety of reasons; our bodies can make too much, not move it around where it needs to be, doesn’t remove it properly, etc. Each drug works differently so it really will help to know exactly what problem you are trying to solve.

You said you had been trying to lower your cholesterol for years and “finally getting it done.” What specifically are you doing that is getting it done? Are you able to take statins, but they just weren’t lowering your cholesterol? Or, you can’t take statins because of the side effects?

If you were a cardiologist I would hire you. This is exactly what I’m looking for in a doctor. Thank you.

I'm not sure where you are located, but in MN I had two awful experiences with cardiologists inside my provider group, and was "fired" due to inability to tolerate statins by each one. For several years I worked on diet, exercise and supplements, but my LDL continued to rise at every test.

Fast forward to 2023 - a new PCP who insisted I try again after she looked at my risk profile (huge family history -heart and stroke - at my age or younger, including parents, siblings, cousins...) She did a lot of research and found 2 she thought I might tolerate, started each slowly with very low dose and alternate days but within 90 days on each I was back in major pain, no matter what adjustments we tried. I quit in April & told her why. Spring 2024 she offered a cardiology consult, and I told her my experience - she located a new one, in a different practice, known for treating statin-intolerant patients.

Summer/Fall 2024 during my consults, the cardiologist offered Repatha, and before I even got started on the med, which required prior approval, I was referred to cardiology by the ER for irregular ECG, angina, shortness of breath & a possible heart attack (it wasn't) - to another doc in his group! Extensive testing followed, confirming soft plaque, an LAD blockage and a few other issues.

My kids (RNs) & spouse thought I was headed for angioplasty, but I wanted no surgery at this time. The new doc agreed to a trial of Repatha & 3 other meds for 6-9 months. So far, so good LDL down, SOB resolved, angina pain gone and tolerable side effects from the meds. We shall see in May whether this is enough for me (the fourth of my 5 younger sibs just reported stent placement yesterday.)

So, should I have been "pushy" sooner in getting to see a better doctor? Should an earlier doc have ordered further (expensive) testing, even before I was symptomatic? Or is it enough to rely on established protocols (which for heart disease are pretty accurate based on a number of studies)?

Today I feel like I am lucky and in a good place. This cardiology group also includes as lipid clinic with follow-up by specially trained RNs and PAs every 30 days to confirm compliance with med, diet & exercise guidelines - a package deal, not just "more pills." They are also part of the Heart Center in our local large suburban hospital, so all other specialties are on site. A family member who cannot tolerate any statins/alternatives also is treated there, with a lot of close monitoring and health coaching.

I am fortunate my PCP found a good place for me to "land". Can you search (maybe via a local Heart Specialty Center in a hospital) for an integrated practice near you?

After resisting statins for more than 25 years I was finally forced to start on it recently. One doc prescribed 20 mg rosuvastatin and another one prescribed 10 mg. I am taking 10 mg on alternate days ( my own compromise formula!). Even with this reduced dosage there are so many side effects including hurting sole & Achilles heel, joint pain, muscle pain etc.

Started 5mg on 1/24/25 and stopped on 2/28/25 suspecting it might be the cause of dizziness and mood swings, and severe heel pain. While I'd been struggling with tendon issues and plantar fascitis, this pain was unlike any I'd experienced. I need to go back on for a rechallenge, but I'm afraid to do so.

Thank you so much for your detailed response. I tried Repatha, twice. Can’t take it due to extreme side effects. I am looking for a doctor that will think outside the box and consider alternatives.

Look no farther….
https://www.mayoclinic.org/biographies/kopecky-stephen-l-m-d/bio-20054286

Started 5mg on 1/24/25 and stopped on 2/28/25 suspecting it might be the cause of dizziness and mood swings, and severe heel pain. While I'd been struggling with tendon issues and plantar fascitis, this pain was unlike any I'd experienced. I need to go back on for a rechallenge, but I'm afraid to do so.

Try 5 mg on alternate days to see if it reduces the side effects.