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PCSK9 Drugs, Repatha/Praluent

A MyHeartDiseaseTeam Member asked a question 💭
NH

Hi,
I have been taking the new class of pcsk9 drugs for over a year now, along with a statin, and over the past 9-10 months have experienced chronic tingling in my fingers, reduced circulation in my fingers and feet, and a degree of chronic numbness in the bottom front of my feet, including some of my toes. Anyone else on these drugs and experiencing the same symptoms? If so, what have you done?

May 9, 2017
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A MyHeartDiseaseTeam Member

Dear Freelander, I see your post here is quite old, but in case you are still around, let me just respond that, yes, I developed peripheral neuropathy while taking Repatha. It is a diagnosis of exclusion. I had tingling in my hands and feet, which progressed to pain and burning. The neurologist told me that my nerves were demyelinated.
After extensive examinations ruled out a long list of possible causes, I simply stopped taking the injections of repatha and, starting about a month later, most of my symptoms cleared up. However, I am left with nerve damage in my lower legs, feet, and toes. I am told it is akin to diabetic neuropathic damage. In any case, it feels like I am wearing stockings and that my calves have been slathered with menthol. My toes are numb.
To my astonishment, my doctors are recommending that I try Inclirisan, another version of a PCSK9 inhibitor. I am of course terrified of this, most especially because it remains in the body for a full year. That is, I get the feeling that if I had a problem with it, then I would end up with severe nerve damage before the effects finally fade. I am curious if you might have also ended up going down such a route and what you learned or experienced.

December 21, 2023
A MyHeartDiseaseTeam Member

Hi, first I am not a medical doctor. That said, there is a lot of information readily available on the management of heart and other diseases. Statins have been known to cause numbness in some people, and sometimes the negative effects do not appear after years of statin use. In my case, I do not know if Praluent/Repatha are a possible contributor, as the drug is so new it will take a few more years before enough people have taken in and real world results are available. My next step is to consult a neurologist for the numbness, cool extremities, etc., and if it appears that the statins and PCSK9 drugs are complicit with these side effects, then something innovative will likely need to be developed. My diet and exercise have been a model for many years, and God willing, I will be able to continue with at least that moving forward. If anyone has any more info about their personal reactions to the use of Praluent or Repatha, I am an interested listener.

May 16, 2017
A MyHeartDiseaseTeam Member

Hi!
I also have been on Repatha for some 3 years now. I also am experiencing strange sensations in my legs. It started on my lower calf's in March 2022. Now both my legs up to my buttocks have tingly, warmish and at times fatigue sensations. Been to the Doctor, then to Neurologist to tell me after he conducted tests on my leg nerves that not all nerves are as they should be. I am off to see a Physician, but do wonder if this is due to the Pcsk9 inhibitor from the Repatha Medication?
I am tempted in not taking it for a month to test this and probably will do so.
Anyone else with similar issues and,are also on Repatha?

January 7, 2023 (edited)
A MyHeartDiseaseTeam Member

I take repatha took my cholesterol down first month.... expensive and can play with your memory.... trade off statins don't work for me

April 12, 2020
A MyHeartDiseaseTeam Member

What you describe sounds like the onset of peripheral neuropathy. Have you had blood work to check your A1C level? Are you in the early stages of diabetes?

I hope for you that it is none of the aforementioned.

November 25, 2017

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