Is anyone on Repatha for cholesterol...

@rnanne after decades of trying cholesterol lowering drugs, stopping them, starting them, stopping them, etc due to the extreme side effects, I finally said NO MORE. I decided I wasn’t going to do that to my body any more. I’m hoping the Terzepitide I’m taking now will help. I have no side effects from it. I’m going to do labs in another 2 months making it 6 months of taking it.

I am currently trialing off Repatha. I started the twice-weekly injection Aug. 4 and took the last one Nov. 11. I believe the side effects for me—ultimately, debilitating muscle stiffness being the worst of it—started mid-October, around the sixth injection.

At first, I didn't attribute the symptoms to Repatha; I thought I was tolerating it OK. But when the worst stiffness kicked in, where I could barely walk, it was like the symptoms I had when I was deemed statin-intolerant on Lipitor (80 mg) and then Crestor. I was then on Nexletol and Zetia for three months, but my LDL was nowhere near where they wanted it, so started Repatha.

I wish I had never taken it. Unlike statins, Repatha has a long half life. Tomorrow will be five weeks off it, and I am still experiencing symptoms, this time including back spasms.

My cardiologist said Repatha doesn't cause musculoskeletal problems, although my PCP and a neurologist say it does, that it's just not as common as with statins. So I feel like I am being gaslighted by my cardiologist and I'm currently looking for a new one. I am also going to the Mayo Clinic Statin Intolerance Clinic mid-January.

I am very worried because there don't seem to be any good options beyond statins and PCSK9 inhibitors. I wish I could tolerate Repatha. I wish I could tolerate Lipitor for that matter. My life would be so much easier. But I don't want to take something that inhibits quality of life the way that the statins and Repatha have.

I have seen comments on the forum here like, What good is having low cholesterol if you can't get out of bed? so I can't take credit for it, but that is how I feel about it too.

@wgr123

That’s exactly how I feel. I’ve only had two doses.
I feel like I have the flu every day. My muscles are sore, arms neck, legs. My quality of life is more important than this so I’m going to take my chances get off of it and start back on the Crestor. No then, my numbers are not where they should be just going to have to be very more concerned with my diet and exercise.

@ibchispas Thank you for the kind thoughts. I sincerely hope Repatha continues to be auspicious for you; it is for many, it seems.

I was on 20 mg of Lipitor for a number of years with no problem; then about 11 years ago, it was bumped up to 40 mg, still no problems. Then it was increased to 80 mg two and a half years ago. A few months into it, my LDL was 51, I believe the lowest it'd been. But then a year ago, I had an episode of muscle stiffness I could barely walk, went to an urgent care.

idk why I'm going into all this, my apologies. I really envy people who can take statins or the PCSK9 inhibitors like Repatha and Prauluent. I had open heart surgery in 2022 to repair an aortic aneurysm. It was the worst thing I've ever been through, though of course I'm glad the aneurysm was discovered and fixed and the surgery was successful.

I'm just worried about what we are going to do about my LDL. I'm hoping the trip to Mayo Clinic was provide some answers.

Thank you again, and wishing you continued success with your medication.

@JustinMcClanahan my experience was that the side effects on Repatha came on a bit more slowly than with statins. For the first couple of weeks I thought I had found a chlorestrol lowering drug that I could tolerate. But, that was not to be. Once the side effects came on they were even worse than as ratings and only got worse, never better. I took it for 3 months, one week and had to quit.