Repatha side effects not believed

No, you are not crazy or wrong. There is a clear problem with certain doctors who can’t or won’t listen, can’t or won’t research what patients say in large numbers. And for many of us it is difficult to sort out what causes what.

I was taking two Amgen monoclonal antibodies (Repatha and Prolia), so I got double doses and was able to figure out the awful side effects. It is sad that both products seemed to work extremely well for their intended purposes, reducing LDL and improving dexa scans of bone density,

Have you seen the bumper sticker that reads “I (heart) aging and dying”. I laughed til I cried at that one.

Thanks for the study and yr excellent questioning of what these side effects really are and how damaging they are. I am considering the idea that they might be nerve damage. You say?

Not Mayo, but I'm in a good multi-specialty clinical system, and also have insurance that allows referrals out when warranted. The cardiology group is outside, because I had a "statins or go away" doc in the system and refused to see him again. My PCP knew about this cardiologist and referred me.

Thanks, nice knowing I'm not alone. Going to my Primary this week and will discuss.

Absolutely, I relate to your experience. I used to encourage people here to learn all they could about their condition and to advocate for themselves at medical appointments because I thought being an informed, proactive patient was a good thing. When I was passive and didn’t ask questions, I simply trusted everything my doctors said—until I realized that approach wasn’t working for me.

Now that I’m more engaged and ask informed questions about my treatment, I’ve noticed a real shift. Many doctors don’t seem to appreciate it. For example, my new endocrinologist told me, “You’re trying to be the doctor,” when I asked a question about my care. I tried seeing someone else, but that endocrinologist refused to answer my questions or clarify her statements, telling me, “If you don’t like the way I practice medicine, then leave and find someone else!”

The problem is, finding a new doctor can take months, especially with a specialist. It’s not as simple as just leaving and finding someone better. It feels like my only options are to stop advocating for myself and stay silent, or have my health suffer while waiting for an elusive appointment elsewhere.

You’re definitely not alone in feeling this way.

Kisu, windyshores had doctors who wanted to learn from their patients. I lay low in the consultations when I realize that I'll need a different physician. They have too many patients to notice if you don't return. But I really have discovered that they each have something-- a bit of knowledge or an unusual perspective to offer.

A doctor who won't amswer questions or explain things is a bad doctor. Imagine the nerve of saying something like that to you. Too many doctors with God complexes, unfortunately.

titiania987, because of peripheral neuropathy experienced by some patients with statin use, there is awareness of nerve damage from the drugs. Fortunately, reversal of damage is usual with discontinuation. Mitochondrial dysfunction is thought to be the cause of myopathy with statins.
With Repatha https://www.neurores.org/index.php/neurores/article/view/552/508#:~:text=Since%20PCSK9%20inhibitors%20promote%20an,PCSK9%20inhibitors%20and%20demyelinating%20polyneuropathy.

Thanks for the article. I read it, but I lack the medical education to understand well. I think I understand the logic of the process at least.

Is it reasonable to conclude, given the rarity of demyelinating nerve fibers as a Repatha side effect, that people who already have a disease that involves demyelination like MS should not try Repatha except as a last resort? Might it cause a flare up of MS?