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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jeffrapp | @jeffrapp | Mar 11 2:14pm

Also wrote lipidemia when I meant PN in the same sentence. I guess the PN is spreading to my brain.

artemis1886 | @artemis1886 | Mar 11 2:43pm

In reply to @domiha "I will ask about Leqvio! Thanks for sharing!! Best wishes! Mike" + (show)

Just an fyi I am going to an infusion clinic. My cardiologist charges a lot. The infusion center accepts the manufacturers discount.

Colleen Young, Connect Director | @colleenyoung | Mar 11 3:11pm

In reply to @jeffrapp "Also wrote lipidemia when I meant PN in the same sentence. I guess the PN is..." + (show)

Hi Jeff,
I corrected the error and replaced repatha with Metanx. Did you want to change lipidemia to PN in the 3rd sentence "I also have hyperlipidemia, and have taken statins for a long time. "?

Did you know you have a 2-hour window to edit your posts? 🙂 If that window of time has passed, simply send the moderators a note and we can fix it. https://connect.mayoclinic.org/contact-a-community-moderator/

jlharsh | @jlharsh | Mar 11 4:25pm

In reply to @domiha "I will ask about Leqvio! Thanks for sharing!! Best wishes! Mike" + (show)

I currently take rosuvastatin, ezetimibe and Leqvio. I’ve had years of not treating. I’ve tried a variety of statins and ezetimibe before. Even Repatha. My understanding is there is a variety of ways cholesterol accumulates in the body and the mix is unique to each person. Each drug works differently. My treatment is taking time to develop and commitment, trusting my doctor to figure out what to do and me to systematically do it (and stick with it).

jeffrapp | @jeffrapp | Mar 11 4:55pm

In reply to @colleenyoung "Hi Jeff, I corrected the error and replaced repatha with Metanx. Did you want to change..." + (show)

Hi Colleen
Yes please make both corrections, and thanks for the info about editing. I should edit myself before posting.
Thanks!

domiha | @domiha | Mar 11 5:58pm

In reply to @jeffrapp "Domihah, your analysis of your situation is impressive. I too have small fiber PN, proven by..." + (show)

@jeffrapp

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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@jeffrapp Thanks for sharing your experience. Actually, I had the podiatrist do the skin biopsy, which she had done on others, and she sent me for an EMG.... because I could not get in to see a neurologist and was desperate to have some tests to see what showed up regarding the SFN. I have an appointment in a week with a neurophysiologist. I'm not sure if he will be able to help me, but at least he has training in neurology. We shall see. I just want to do everything I possibly can to get better.... and if not, at least not have this get worse. And, to be honest, I'd like SOMEONE to tell me I do NOT have MS or ALS, rather than SFN. The increased stress and anxiety related to the numbness and tingling has been a true nemesis.... and I don't want to look back later and realize that if I had only done this or that I might have fared better. Best wishes! Mike

artemis1886 | @artemis1886 | Mar 11 8:25pm

In reply to @domiha "@jeffrapp Thanks for sharing your experience. Actually, I had the podiatrist do the skin biopsy, which..." + (show)

I will be truthful. I have had several neurologist tell me this mimics Parkinson’s and MS. This has truly been a frustrating road for me. My sed rate, CRP, C3 and ANa all inflammatory markers have been elevated. The doctors have it narrowed to RA, lupus and Sjogcrns.
My symptoms on the neuropathy dizziness, balance problems, feet feel like burning, fire sometimes and I have lost the feeling in my whole leg. My score for the severe axonal sensorimotor peripheral polyneuropathy is a 9.5 they told me the EMG/ nerve conduction test does not ever need to be repeated because 10 is the highest it goes. I have been tested for small fiber neuropathy positive. My other symptoms cardiac autonomic neuropathy confirmed by cardiologist and electrophysiologist bradycardia/tachycardia and having a hard time regulating my blood pressure it got as high as 159/99 they put me on blood pressure medication and then my blood pressure fell really low making me sick. Today 130/70. These are the other problems I have gastroparesis, kidney, bladder along with tremors. My hands shake so bad my husband has to cut up my food. Since, I can’t feel my hands I have cut them several times with a knife and have had to have stitches.
When you take all the symptoms and look at the two together it’s interesting. I do not have the antigens for Parkinson’s. Then we have the non regulation of body temperature freezing when it’s 110 in Texas. My husband says when I wake up in the morning my body is so hot it feels like he is sleeping with a radiator gee thanks. He comes to me to get warm. My hands are so hot they feel good when he puts his cold hands on top of mine.
I don’t know if you saw my previous post but I have learned neurologist have now became specialized. I was told to see a neuromuscular neurologist, They specialize in neuropathy. A regular neurologist could not answer my questions about my symptoms. I flew to Boston to see a research neurologist. Dr. Oaklander has some good lectures on YouTube. She told me I needed a neuromuscular neurologist, neuromuscular physical therapist, immunologist and a rheumatologist. That’s a lot of doctors left my head spinning but it explained why no neurologist could treat me. Anxiety also goes with neuropathy. It makes sense the first time I woke up in the middle of the night and could not feel my legs. I started hyperventilating and it took me awhile to settle down. I had a girlfriend with MS a lot of our systems are the same. She was in a car wreck and passed away.

domiha | @domiha | Mar 11 9:52pm

In reply to @artemis1886 "I will be truthful. I have had several neurologist tell me this mimics Parkinson’s and MS...." + (show)

@artemis1886

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@artemis1886 Thank you for sharing. I am so sorry to hear that you have such a multitude of issues going on. I forgot to mention in my last post that I DID finally get an appointment with a Neurologist who supposedly deals with patients with neuropathy .... in Atlanta for late June. He is a two-hour drive away, and as I said, I'm seeing a neurophysiologist next week who has very good reviews... only 40 miles from my home. Fingers crossed that he may be able to help me. But I have learned so much from this Neuropathy support group and people like you who share experiences that I am now better armed with the questions that need to be asked. I don't want Gabapentin or Lyrica and to be told there's nothing else to do. I want someone who will have tests run to try and confirm what's going on.... and who will work with me on checking vitamin and mineral levels and anything else that may be factoring in here. I had a four-level laminectomy in Nov 2022, and it was after that surgery that the neuropathy began to surface. So I also wonder if there could be some connection there. I needed the surgery, and I am now able to walk again thanks to it.... but this neuropathy is the pits. Obviously, you understand too well what I mean. I do hope your working with neuromuscular specialists will yield some results for you. As for anxiety, I have lived with panic disorder all my life, and this just tends to exacerbate that, though my symptoms are much more manageable now than many years ago.
Best wishes! Mike