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Metanx, Repatha, Statins and making sure doctors keep check...
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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Your story is VERY typical of those of us who are B6 Toxic. I am 74 and have a similar story regarding neuropathy and proprooception issues.There is a lot of research and a path to healing from B6 Tixicity at understandingb6toxicity.com AND on the Facebook support group Understanding B6 Toxicity Using Western Research. Both have been a lifesaver for me. Since you have tested high B6, you are most likely toxic. Other countries have warning labels about excess B6. You won't regret joining us.
Even though B6 is water-soluble, excess B6 when accompanied by dehydration can result in Toxicity. The excess is stored in our muscles and nerves. It takes about one to two years for it to be excreted from both, even though bloodtestsmay show normal again. Please visit the website to learn more.
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7 Reactions@smutchler Thanks for sharing this info.... and for the invite. I have asked to join the FB group. And I'm headed to the Web site now! Best wishes! Mike
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2 ReactionsYou will find a level of support there th lat you cant imagine! I checked Metanx. It has 35 mg B6. You will learn that the recommended RDA is 1.5 mg. Not surprising that you are B Toxic.
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2 ReactionsRepatha causes neuropathy all statins do. The cardiologists put me on a non statin and I am doing great. I am on Leqvio. (Nonstatin does not affect neuropathy) I took one shot, another one three months later and then one every six months. My high cholesterol is genetic. It has made a huge difference. I could not take statins they caused way too much pain and I felt like I had the flu. This is more tolerable for me.
As far as Metanx they took me off of it put me on a multivitamin and I take B12 injections bi weekly. Normally, after the shot it’s high (1026) for two days and goes down back to normal. When I don’t take B12 injections I get severe insomnia, muscle pain and weakness. Last week I could hardly walk to the restroom so weak and then realized I had not taken the injection since January. I took it and started feeling better in a couple of hours. I have gastroparesis due to the neuropathy and stomach ulcers.
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5 ReactionsRepatha is not a statin.
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1 ReactionWhy would you take repatha and a statin at the same time? I was dx with SFN long before taking repatha. I also have CRPS and it's hard to distinguish which or both are creeping from feet to knees. I wasn't aware of my instability at times being from SFN, thought my bad knee was the problem. I will check it out. Thanks.
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1 ReactionMy cardiologist added the Repatha and Vascepa..... to help prevent plaque build up and lower triglycerides and raise good cholesterol. Apparently they CAN all be taken at the same time. I switched from the statin to Zetia, and I've learned that some doctors prescribe both Zetia AND a statin. I cannot PROVE that the Repatha or Statin caused my SFN.... but I've read a lot of accounts from people saying that caused theirs. At this point, I'm just trying to cut out anything that MIGHT be causing or adding to my SFN. Best wishes! Mike
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1 ReactionI will ask about Leqvio! Thanks for sharing!!
Best wishes!
Mike
Domihah, your analysis of your situation is impressive. I too have small fiber PN, proven by skin biopsy. I also have hyperlipidemia, and have taken statins for a long time. I stopped about a year ago, because at my age (79), their benefit may be less than the risk, although I know that the risk of causing PN is unproven. One poster's statement that all statins cause PN is untrue and dangerous, in that it may frighten a patient away from taking a drug that is beneficial and with very low or no risk.
Here is a quote from a recent, reputable journal on this subject:
"Various pharmacologic agents are available for the treatment of hypercholesterolemia, including 3-hydroxy-3-methylglutaryl coenzyme A (HMG-CoA) reductase inhibitors, commonly referred to as statins, which offer favorable lipid-lowering effects and reductions in morbidity and mortality. Statins are usually better tolerated than other lipid-lowering agents and therefore have become a mainstay of treatment for hypercholesterolemia. However, recent case reports of peripheral neuropathy in patients treated with statins may have gone unnoticed by health care professionals. To evaluate the possible link between statins and peripheral neuropathy, literature searches using MEDLINE (January 1993–November 2003) and International Pharmaceutical Abstracts (January 1970–June 2002) were performed. Key search terms were statin, neuropathy, and HMG-CoA reductase inhibitors. Based on epidemiologic studies as well as case reports, a risk of peripheral neuropathy associated with statin use may exist; however, the risk appears to be minimal. On the other hand, the benefits of statins are firmly established. These findings should alert prescribers to a potential risk of peripheral neuropathy in patients receiving any of the statins; that is, statins should be considered the cause of peripheral neuropathy when other etiologies have been excluded. "
I understand that you have had trouble seeing a neurologist. Have you tried your closest university, and have you contacted your county medical society?
I would question using a podiatrist for treating PN. Their area of expertise is the foot and ankle, not the neurological system. Also, Metanx is an expensive and unproven treatment for lipedemia, and may have caused vitamin B6 toxicity. A suggestion for he poster who is getting B12 injections: methyl B12 is an oral form that is easily absorbed and much cheaper than the injections. High levels of B12 are to be expected in those taking supplements, and are of no concern.
A problem exists in the medical system when the patient is seeing many providers for the same illness. It is very difficult to coordinate care. This should ideally be done by your primary care provider, but he/she may not have the time to see all the records. I applaud your efforts to intervene on your own behalf.
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3 ReactionsSorry, I mistakenly wrote repatha when I meant to write metanx above. My bad.
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