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Started Repatha - Side Effects

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

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@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.

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Replies to "@llynch17056 Hi. I've been on the boards here very sporadically and briefly recently. I think I..."

@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.