Repatha

Repatha in someone with numbness in the feet sounds extremely dangerous to me. I stopped using Repatha because of repeated falls. It seems logical that numb feet might makes falling even more likely.

Of course, we are all different, so maybe it will work for you. Good luck.

Thank you. When you say repeated falls, were you dizzy, numb feet and did you have any of these symptoms prior to taking Repatha. And what are you taking now to lower LDL.

I have been on Repatha for over 6 years. Repatha is suggested to be used with a statin. I am statin intolerant due to the muscle ache side effect, but have been able to take Pravastatin 10 mg. I was diagnosed with PN in 2019 and CIDP in 10/25 after two months of testing: EMG/NCV,
PN blood panel, Brain MRI, Spine MRI and finally Lumbar Puncture finding very high protein in my CSF. My main CIDP symptom is feet numbness and muscle weakness. I have been on Vyvgart Hytrulo for 15 weeks. I feel ok and am quite active using a cane as the numbness causes balance and dizziness. I have NO PAIN! None of my docs: Cardiologist, Neurologist or 2 different Motions Disorder specialists have talked about a connection between Repatha and PN or CIDP symptoms but I did read about 2 cases online. It’s a tough disease and everyone is different. Best of luck on your journey.

@moorethrpy In a long life, a lot of things happen, but no, my life after starting Repatha was very different from before Repatha. My many falls were caused by Repatha plus heat. Falls never happened in cool temperatures. Never.

I now take Lequvio, just started, so I have no conclusions about this med.

@mikeyindiana Thanks for your story. I don't have CIDP....just PN ideopathic so I don't take Hytrullo, My Columbia neurologist just okayed it so I guess I will see. I fear anything new that might make my condition worse or more progressive. I am pretty stable right now leading a pretty active life. I teach a class on Fall Prevention and I am very familiar with the risks. SO grateful for this message board. Good luck to you.

I just started Repatha after I announced to my primary care physician that I had stopped the statin on my own. Today will be my second shot. I do’t feel any difference in the numbness in my feet and ankles. I will let you know of any changes.

@phyllisq I just did my first injection. Hopefully none the worse. Thanks for sharing.