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Started Repatha - Side Effects

Heart & Blood Health | Last Active: 2 days ago | Replies (556)

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@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.

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Replies to "@wgr123 Lordy, I feel your pain. I’ve been on Nexletol a few months. I’ve had two..."

@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.