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

Posted by domiha @domiha, Mar 10 6:40am

There is still so much that seems to be unknown about neuropathy.
I am a 73yo male diagnosed with SFN by my Podiatrist, based on a skin biopsy and an EMG. When the SFN was identified, the Podiatrist put me on Metanx in October and said it could take several months for me to notice any change in my idiopathic small fiber neuropathy in my feet. It is a supplement designed to help with the neuropathy. I've been taking it twice a day, as instructed. I just got my blood checked last week by my PCP and the results show my blood plasma B6 level to be at 90.0 when the reference range from LabCorp is 3.4-65.2 (ug/L), so it is HIGH. Metanx also contains B12, and my B12 level came back at >2000 with a reference range of 232-1245 (pg/mL), so it, too, is HIGH. I cannot tell that the Metanx has done anything to improve my symptoms.... and the tingling and numbness have even begun to move up my lower legs in the past few months. So I will stop the Metanx and hope that any damage from excess B6 may be reversed. I did have my blood drawn in Sept of 2023, at which time my B12 was a bit high, but my B6 was in the normal range, so I feel sure that the Metanx is the reason for the increase in B6. But if I HAD NOT INSISTED on having my PCP check my B6 level, it would never have been done. I will see him next week for my 6-month check and to go over my lab results, and we will discuss these concerns. I have been waiting for 6 months to get an appointment with a neurologist to no avail... but I did find a neurophysiologist and have an appointment next week. I'm hoping that he may help me explore options for my neuropathy. I have numbness and tingling, but no real pain in my feet. But the numbness affects my proprioception and, thus, my balance. I have not fallen, but I usually carry a cane to help with balance. So, you go to a doctor who, with good intentions, gives you a supplement... and that supplement sends the B6 into the HIGH range, and we know that B6 toxicity can cause neuropathy. I also have been taking Repatha injections every two weeks for the past several years.... prescribed by my cardiologist to help with cholesterol. It has greatly improved my good cholesterol, which is now in the normal range.... AND my bad cholesterol which is now in an acceptable range. But I've recently read MANY reports of people taking Repatha and having adverse reactions, one of those being neuropathy. For now, I have halted the Repatha, as well... and will see the cardiologist for an annual check in a couple of weeks. But what I am realizing is how much WE, as individual patients, have to read and research and QUESTION when doctors prescribe things for us. A couple of months ago, I also asked my PCP to switch me from pravastatin to Zetia for my cholesterol as I thought some of the muscle weakness and pain in my calves might be coming from the statin. I've noticed a lessening of the pain, but I worry that without the statin I'm increasing my chances of a cardio event or stroke. I am able to walk, but I'm wobbly. The PN has taken as much of a psychological toll as a physical one on me.... perhaps even greater. It just seems that we are damned if we do.... and damned if we don't.... and there is still so much about this condition that is vague and "unknown." And it seems that we must always advocate for ourselves to try and find solutions. So DO follow up with your doctors. Do insist on them checking your vitamin levels. Do your own research and reading. Sorry for the long post.... just needed to vent to people who would truly be able to understand the frustration. Best to all! Mike

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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.

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@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

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@artemis1886

While Repatha is not a statin it affects your nerves. I apologize for putting it in the same category but since it affects the nervous system I threw it in. Once again I apologize. There are several articles about Repatha and the nervous system if you google it. This below is not the only article. A lot of this article is hard to read if you are not in the medical field.
Repatha and the nervous system
https://www.sciencedirect.com/science/article/pii/S0022227523000998
BBB-blood brain barrier
Etiology-cause
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7892743/
https://www.neurores.org/index.php/neurores/article/view/552/508#:~:text=While%20on%20Praluent%2C%20patient%20developed,then%20progressed%20to%20thighs%20bilaterally.
https://www.researchgate.net/publication/336434824_Chronic_Inflammatory_Demyelinating_Polyradiculoneuropathy_Association_With_Low_Cholesterol_Levels_A_Case_Report_in_a_Patient_Taking_PCSK9_Inhibitor

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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.

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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.

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@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

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@jeffrapp

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.

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

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@artemis1886

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

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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.

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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!

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@pondoak

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.

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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.

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@jeffrapp

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.

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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

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