Started Repatha - Side Effects

@jmalsky that sounds like a lot of meds for one issue. Just saying. If you are referring to Repatha, I didn’t have that reaction. After a few weeks I was hurting so badly I had to quit it.

@llynch17056 Hi. I've been on the boards here very sporadically and briefly recently. I think I saw somewhere where you had posted something about being on Nexletol more recently, but I can't find it.

Anyway, on May 8 you wrote: "I’m on week 10 with zero side effects." I'm just wondering since it's been a couple of months, if you have any updated info you're willing to share, if you've had labs since then, e.g.?

Our experiences have been pretty similar; I couldn't take statins, and after I was deemed statin-intolerant, I was on Nexletol + Zetia for 83 days. My LDL had been 132 before starting it, and after those 83 days, it was 114, which my PCP was not satisfied with and recommended Repatha (he wants it below 70, ideally at 50). I wish I'd never heard of Repatha; I had to stop at 8th injection, and the side effects lasted for a looooong time.

I had the first Leqvio injection five weeks ago. I am once again struggling, yet hope that it's temporary, of course. My cardiologist had said she has 20 patients on it and, knock wood (her comment), no one had side effects. I am afraid I'm an outlier.

It's really a moot point, being hindsight, but if I'd known then what I know now, I'd have asked my PCP if I could stay on Nexletol longer. During the two-plus months I was on it and Zetia, I didn't have the side effects I've had on statins, Reptha, and now Leqvio. So I wonder how it's working for you.

Thank you for any info you're willing to share.

@wgr123 Lordy, I feel your pain. I’ve been on Nexletol a few months. I’ve had two uric acid and kidney function tests because those are the prominent side effects. At the end of this month I go for my annual and I’ll have all my blood work done. So, I don’t know yet if or how much Nexletol reduced my cholesterol. About a month ago I started not feeling as good but nothing like how bad I felt on statins or Repatha. Not even close. My rule is that if any med makes me lie around feeling bad, I can’t do yoga, I can’t cut my grass, then I won’t take it. Period. (Yoga is a good barometer becauseI can tell just how strong I am when I’m doing yoga.) What’s the point if I have no life? But, it’s also summer in LA so it’s so hot and humid and I never feel as well in summer as in other seasons. I have a temporary new yoga teacher (my regular teacher returns in two more weeks), so that could influence how I feel as well. I felt SO good before Nexletol, strong and energetic. But, again, I’m not sure it’s the Nexletol nor is how I’m feeling extreme. I will not be adding any other med to the Nexletol. I’ve always said I’d rather die younger than be in the pain and misery of statins and Repatha. On top of that I’m a bit skeptical about the very low cholesterol numbers the doctors want, the studies that started the whole statin era have been proven to be a scientifically faulty PHARMA push. I am also skeptical of doctors that don’t seem to care about extreme side effects ruining your life as long as cholesterol numbers are extremely low.

I do the particle blood test, eat healthy, exercise, keep my weight at a normal place and look at my ratio. All of which, I think, compensates for cholesterol that’s not super low. The highest my cholesterol has ever been without meds is 257.

I am also on low doses of Terzepitide which is supposed to help heart disease. I do that to maintain my weight. Unfortunately, even though I am 79 I still tend to eat too much and have a sweet tooth. The Terzepitide makes me a little less hungry, kills the sweet tooth and makes me crave protein.

I take responsibility for my life style. I eat organic, no fast food or sodas, no ultraprocessed foods, etc. I walk between 6,000-10,000 steps a day. But, then, I prefer healthy foods and being physically active, it’s easy for me.

My father died of a heart attack. From what I can see heart attacks are not a bad way to go versus dementia and prolonging a sad sedentary life. My grandmother died painlessly in her sleep at 98 still living at home. That’s what I’m hoping for. She didn’t take statins.

Let’s stay in touch on our progress.

@llynch17056 Thank you so much for the response. So many similarities.

I too have a family history of heart disease, both sides. My maternal grandfather started having heart attacks at 50 and dropped dead of one at 60. My paternal grandmother had lifelong heart problems and died at 67. My father died at 53; an autopsy wasn't performed, but four years ago, an echo showed that I had an aortic aneurysm (surprise! and I'd been seeing a cardiologist for about 15 years; despite family history, he never did an echo. And that cardiologist is on the faculty at NYU). Sorry to digress; can you tell I'm bitter?. Anyway, when my aneurysm was discovered, it was already at the point where I had to have open heart surgery right away.

But the docs then and since now believe that the way my father died, it was probably also an aneurysm, and that can be genetic.

But before that, my PCP in 2004, because of my family history ordered a calcium score, and it was 300, so coronary artery disease, and I was put on Lipitor 20 mg; some year later it was bumped up to 40 mg, then the. year after I had surgery, it was bumped to 80 mg and Zetia was added, and about a year later, the bad side effects started. Debilitating muscle stiffness. Switched to Crestor; three weeks on it, I thought I had MS. Statin-intolerant, cardiologist said. Then Nexeloto and Zetia (the story I told above), and then Repatha, and now Leqvio.

My total cholesterol has never been over 200 (but right at it). Untreated, my LDL hovers in the 130s. Because I have CAD and high cholesterol and also elevated lipoprotein (a) the docs want my LDL below 70, preferably at 50. It was 52 the last time I had a lipid panel before all the side effects started.

I agree with what you have said 100%. I switched cardiologists this year because my previous one told me Repatha didn't cause musculoskeletal issues. It's even in Repatha's commercials that it does! And my PCP, while he acknowledged that Repatha could cause side effects like I was having, kept insisting that the side effects should be lessened, and that he thought I had fibromyalgia. I think I had side effects from Repatha well past what they say the half life is.

I saw a physiatrist in May; he says I don't have fibromyalgia, and he recommended I take up yoga. I found someone who does privates (shared with one other person), and I did it the first time the day before the first Leqvio injection (and the only one I've had so far; second injection is Sept. 14). It was challenging, but I wasn't sore the following days(s).

By the time I had the second yoga session, Leqvio had been in my system for about a week and a half, and the day after, I thought, oh no, that old stiffness is back.

I messaged my cardiologist in MyChart about what was going on, and she wrote: "I haven't seen that side effect, but as we know, any medication has the potential to cause any side effect at any time in any patient. I'm hoping it's something else, of course. I'd hold off on yoga for now, take the Coq10, and take some ibuprofen for a few days, and hopefully it resolves and doesn't come back!"

It has been up and down since the Leqvio injection; I was desperate for it to work. I'm hoping that it will sort of settle down as time goes on, but I won't do the next injection if I continue to be practically unable to walk.

This was entirely too long, and probably I should have put all this in the Leqvio threads. I was just trying to think this week what options for me there might be since I am statin-intolerant and and can't do Repatha—and Leqvio is a question mark at this point. Thought of you being on Nexletol. I guess we'll see. I have an appt with PCP next week. Quality of life counts for a lot, though (I'm 67, and for much of the 18 months-plus have felt like I'm 100).

I hope Nexletol turns out to be effective for you. Thank you again. I will stay in touch re: progress.

You’ve been through it. All I ask of my cardiologist is that they believe me. I am not STUPID. I also refuse to take meds to mask the side effects of other meds etc. that’s a very slippery slope. I deeply distrust PHARMA. I just read today about a new cholesterol lowing drug approved by the FDA. It says it has the same side effects as the placebo. Doors that mean NO side effects. Also, because it’s new they don’t really know what long term effects it has, but it’s supposed to lll o we’re cholesterol by 60% which out performs any other cholesterol reducing drugs. I’ll post the name of it here.

@llynch17056 encilitide is the name of the new drug. It may be hopeful. Sorry for the typos in the last post. My dog jumped on me. 😊

I am reading through this discussion, Started Repatha - Side Effects created by @llynch17056 back in 2024. I notice comments about CoQ10 and want to one, find out what your experience has been like with the supplement since and also, provide some baseline information you may already be aware of, but also helpful as members paruse through the discussion.

I am linking others I notice in the conversation with you: @vaniag, @tinamay, @too, and HomeAgainLA, hopefully for updates specifically about personal experience with CoQ10.

I take CoQ10 because it helps my overall body comfort. Like others here I want to know enough to be able to spend my money wisely and manage my health, so anything I can learn helps. If you haven’t seen what Mayo Clinic has to say about CoQ10 specifically, I will provide links to a couple of online resources. I copied relevant section initially that I believe these speak to the conversation, specifically:

- Types of CoQ10
You may see them under the names “ubiquinone” or “ubiquinol.” Ubiquinol tends to be better absorbed than ubiquinone, and the ideal dose is typically 200 mg once per day. Most of the time, ubiquinol is sold in a gel-based or liquid-based capsule.

- Research about statin-induced myopathy
Some research suggests that CoQ10 might help ease the muscle weakness and pain that can happen when taking statins. There isn't enough evidence to know for sure.

- What does Mayo Clinic think?
Our take - Generally safe - Coenzyme Q10, also called CoQ10, supplements might be helpful for treating conditions such as congestive heart failure and preventing migraines. Most healthcare professionals think CoQ10 is safe, with few side effects. But ask your healthcare professional before you take the supplement.

Here are the articles with their links:

- Mayo Clinic Q and A: Statin use doesn’t always mean coenzyme Q10 supplement is needed
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-statin-use-doesnt-always-mean-coenzyme-q10-supplement-is-needed/
- Coenzyme Q10
https://www.mayoclinic.org/drugs-supplements-coenzyme-q10/art-20362602
What are your current thoughts on CQ10?

CoQ10 gave me statin-like side effects and had no effect on lowering my cholesterol. I have such a strong reaction to statins, bedridden and progressively felt as though they would kill me, I’m not interested in taking them in hopes CoQ10 might relieve some of the side effects.

Since I posted I have been trying Nexletol. I had side effects as well, but not bedridden. Pain in my joints and tendons. But I wasn’t bedridden and still went to yoga. I am now 5 1/2 months into Nexletol and most side effects have gone away. I still believe it is harming me, but I will stay the course for now.

After being on it for four months my blood work had improved. My doctor is satisfied even though my cholesterol was 200, down from 248, , my ratio was 2.2, down from 3.18. My LPa was down slightly. I told him I was not willing to take more meds and that I was satisfied. He agreed. He said, “there’s no point in having lower cholesterol but you can’t get out of bed, and, with such a great ratio, I think you’re fine.”

@jlharsh I took CQ10 for 2 weeks but had to stop after getting daily headaches which I never have . The headaches stopped after I stopped the CQ10. I took Ubiquinol at 200 mg.

I couldn’t take it either.