Started Repatha - Side Effects

One of the published side effects of Repatha is flu symptoms. Also, joint and muscle pain and back pain. I had back pain so bad that taking a steep hurt my back. I’ve done yoga for over 10 years and my muscles couldn’t hold poses and my joints hurt so much i couldn’t do anything I had been doing. I am off of it for a couple of months and my body is coming back. I can do yoga again and can walk 10,000 steps a day again. Not everyone has side effects. I believe those that tell me they do.

I am going now to pick up my Repatha - $500.00 for one month because of the Tier class of the drug making me meet a deductible ( medicare Part D with Humana) - I talked to my pharmacist who said many of his clients tolerate this well, much better than statins. Next month, and onward, will be $125.00. Most of my prescriptions are 10.00 or less so this is sticker shock. I also have a sinus infection and have been really achy and I'm not on anything for cholesterol, so I will not start this drug until I am fully well. If I were on it, I would blame it for my lingering month of sinus issues. I appreciate this forum and people in the trenches talking, not doctors and pharmacists. Still, it is hard to tease out what causes what, especially as we age. I can attest to 4 months of bliss with pain and weakness remitting when I stopped atorvastatin. I only gave Zetia a week because I got aches again, but was it the sinus infection? I don't know.

I don't know your age, but I am wondering if some of these muscle aches and weaknesses are age related, but the statins and perhaps other drugs make these issues much, much worse. I am 66 1/2 - started statin at 64 and suffered increasing pain and weakness and cramps that progressed over 2 years. I eventually got 90% better when I stopped. Everyone noticed my decline is so many areas of my life in my statin years - couldn't do yoga, pick up grandkids, walk up stairs or get out of bed or the car without terrible pain. These are not little things. Quality of life issues big time.

I experienced the same. One doctor finally said “some people just can’t take them.” That was the first time any doctor implied I wasn’t falling in 10 years of this ordeal. I am 77. When I’m not on statins or Repatha I walk 10,000 steps a day, do all my house and yard work, practice yoga. On statins I am practically bedridden and every step hurts.

No one can tell you the answer. My experience was that every statin, every dose caused intolerable pain. So, if you had pain on one you probably had pain on the other. And, sadly, will probably have pain on Repatha. The pain takes longer to show up on Repatha, for me, about 2 months. I thought I had finally found one I could take, but, when the pain came, it can hard. Just my experience. I wish you well. Unfortunately, doctors just want you to take it no matter what pain you are in. A lot of people take statins without a problem which makes it hard on those that have bad side effects. The doctors tend not to believe us, which is ridiculous. I’m not a whiny toddler, I am a 77 year old smart woman that wishes she could take them, it would be so easy if I could. Instead I have spent a decade having terrible life disrupting side effects as doctors keep trying different brands and different doses after which I spend months each time nursing myself back to health. I finally said “I quit” to which my doctor said “then I can’t help you.” A stunning statement to hear from your heart doctor. Actually, if he really cared, he would work with me on other things that might help and, at least, be sympathetic. On my own I got a base line Lipid Panel and started taking Beta-Sitosterol PlantSterols which are supposed to to lower my LP(a). So far no side effects. I will do another Lipid Panel in 6 months. I have to do something.

I hear you. It is a hard road for sure. We are not being non compliant. We just want a good quality of life.

Truly. One doctor threatened to put “noncompliant” in my medical chart!!!

I stand corrected about Repatha. But, I can’t take it due to extreme side effects. But, Yes, it's possible to have a heart attack even if you have low cholesterol. In fact, most heart attacks occur in people with normal cholesterol levels. Statins do not lower LP(a). I have read about some trials for drugs that lower LP(a), but trials scare me.

I really like my cardiologist, but I can tell it’s all about the numbers. I suffered side effects of statins for 2 years, while he minimized it. I had to tell him I was stopping either with or without his permission. He said ok. Pain and weakness went away but numbers back up. I had 4 months of feeling good again and he asked me to try Zetia. Within a week the pain started again. Now he’s called in Repatha. I have not started it.

I heard on a doctor podcast that it's the Apo B that's the killer. "Apo B" is considered the "killer LDL" because it represents the protein component of all atherogenic lipoprotein particles, including LDL, and is a more accurate indicator of cardiovascular risk compared to just measuring LDL cholesterol levels alone; essentially, a higher Apo B level indicates a higher number of potentially harmful LDL particles circulating in the blood, making it a better marker for atherosclerosis development.
Key points about Apo B:
What it is:
Apolipoprotein B (Apo B) is a protein found on the surface of all atherogenic lipoproteins, including LDL, VLDL, and IDL.
Why it's important:
Since each lipoprotein particle carries only one Apo B molecule, measuring the level of Apo B gives a more accurate picture of the total number of potentially harmful particles in the bloodstream, even if the LDL cholesterol level appears normal.
Clinical implications:
High levels of Apo B are strongly associated with an increased risk of cardiovascular disease, even when LDL cholesterol levels are seemingly within normal range.
https://www.jacc.org/doi/10.1016/j.jacc.2020.11.079#:~:text=Although%20controversy%20around%20the%20causal,cholesterol%20(3%2C4).