Metanx, Repatha, Statins and making sure doctors keep check...

Zetia worked great for me, keeping my cholesterol to around 150 for years, but my primary and endocrinologist want me on a statin, nonetheless due to my type 1 diabetes. So, I’m back on Crestor.

@celia16 My doctor reluctantly put me on Zetia, and did comment that though it may help lower my cholesterol it would not provide the protection from a cardio event that a statin would. So obviously there is something in the way the statins work that is beneficial in preventing heart attacks and strokes. I've recently read that a lesser dose of a statin can be just as effective, so I may ask about taking it three days a week.... and see if the muscle cramps come back. Hope the Crestor will not cause you any issues!! Best wishes! Mike

I scanned the first article you posted above. I didn't read the whole thing. I agree that it is hard to read even if you are in the medical field. However, I don't agree with you referencing it in this discussion, which is about, in part, the possibility of cholesterol lowering drugs causing PN.
My reading of this article is that there is no proven relationship. In fact, I think that they may be implying that there may be a therapeutic relationship to be discovered in the future.
If I am correct, then this is another example of well meaning people posting things that may scare off people from proven treatments because of rumored, low probability or incorrectly stated side effects.

I also had a very bad reaction to Repatha. I believe after only two months it accelerated my neuropathy from my feet to my knees. I stopped the drug, but that did not reverse the damage. I think it is not a good drug.

@pondoak I'm not sure yet that the Repatha is affecting my neuropathy.... but after reading SO many peoples' reactions to the drug, I did decide to stop it for awhile to see if there is any noticeable change. I see my cardiologist at the end of next week and will ask her about it. I'm already taking two other things for my cholesterol and triglycerides, and she added the Repatha a couple of years ago. Sorry to hear you also had a negative experience with it.... and that coming off didn't reverse the damage. How long ago did you stop taking the Repatha? Best wishes! Mike

The Foundation of Peripheral Neuropathy list statins as a cause of neuropathy as chemotherapy drugs also.

We may be getting too deep in the weeds in this discussion. However, I do think it's important for patients to be fully informed in order to make rational decisions, so here goes.
Repatha, as previously pointed out by another poster, is not a statin, so it is not a subject of the following discussion.
I looked at the FPN website. Under drugs that "may" (note their word usage) cause PN, they don't immediately list statins, but have a drop down menu which is more complete. In that list, they list statins, but the heading for that list uses the word "can" cause PN. These words have different meanings. I believe "may" is more accurate, as the whole subject is still unproven, and is likely an unusual adverse side effect if it even occurs.
My point is to not scare off people from using any drug, if the benefits outweigh the risks. In the case of PN and statins, that is a hard decision for one that already has PN, as one would likely have to depend on their own experience and beliefs rather than the research. It is likely nearly impossible (as in my case) to determine from my experience whether the PN is caused by statins, but I doubt it. Anyone near my advanced age (79) may decide that since the benefits of statins accrue at a slow pace, it may not be worth taking them. That was my decision. I think (don't quote me) that there even is a position paper by the Academy of something that statins are no longer indicated past a certain age. On the other hand, if I have a stoke before I die, I'll probably feel differently about this whole subject. I'll be sure to post, if I can still type.

I do know one thing about statins and that is that they destroy the Co Q10 that our bodies produce naturally and you need to take this supplement in your diet if you are on a statin drug. I know because I used to work for a pharmaceutical company and most of the pharmacists were not aware of this either as well as doctors. They prefer to recommend drugs instead. I have been on a statin with a CoQ10 supplement for years and have had no problem with the muscle aches that occur. I talked with a pharmacist about this when he was complaining about the muscle aches from his statin drug and I was able to give him some samples of CoQ10. When I saw him a month later he could not believe the difference it made. If I can help someone with this information it would make my day. All the best!

Repatha put me in the hospital the first shot. Above my liver turned purple and my liver enzymes shot sky high. The hospital would not release me until they came back down.

I’m 89 had heart bypass surgery 30 years ago I’ve been on statins since then my cardiologists changed me to repatha injections for the last year when my PN started it’s been about a year ago. It’s a same I’m so confused I just don’t know what’s right and what’s wrong it would be nice if we could get a definitive answer regarding PN how it starts and how u can cure it. We can fly people to the moon, do heart transplants I could go on and on but this disease or sickness baffles everyone. I belong to the Mayo Clinic group and have read so many horrible stories. Yes I am confused but I try to stay positive it’s not easy when u can’t find (someone) who has beaten this dreadful disease. My only satisfaction I’ve only had it for about a year my worst affect is my (balance) with a few other side affects that I can deal with. But I consider myself very fortunate from all the things I’ve read and people I’ve talked to , but this disease still has taken taken a toll on me because of the person I was and the person I am today. I am not a very religious man but I pray for all those who have been affected by this awful disease. GOD BLESS U ALL