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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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@anthonyfesposito Thank you for sharing your journey and your thoughts. Like you, my most troublesome symptom from the PN is the balance issue. Some days I'm better than others, but I usually carry a cane if I'm going to walk a long distance, just in case. My PN appeared after my laminectomy 15 months ago, but I had been almost unable to walk for a year, so it could have started back then and I just didn't notice it until after the laminectomy. Thanks to the surgery, I can walk. My muscles are not as strong as they were... but it's a huge improvement since the laminectomy. Like you, Anthony, I wish SOMEONE could find a treatment or cure for this disorder..... and find out what is actually causing it. Just the lack of balance takes a huge psychological toll, and I'm sure it's much worse for those who also experience pain and cramping. I am grateful for this Mayo Connect for the support of others who UNDERSTAND all too well what we are dealing with. I have learned so much from the stories others have shared here, and the wealth of information available from the Foundation for Peripheral Neuropathy.
I can't say for sure that either statins or Repatha caused my neuropathy. And IF they did, that does not mean that all people would be affected the same way. I'm still in the questioning phase and trying to find some encouraging news. I wish you all the best!!! Mike
To be truthful I am surprised also. Dr. Anne Oaklander and her daughter been researching neuropathy since before 2015.
The interesting part is neuropathy is covered very little in RN school. A friend and I were talking her daughter has this and is totally disabled she agreed with me it was not covered during RN school. Some of Dr Oaklander’s lectures online. The cause is diabetic, HIV/AIDs/ idiopathic/ some kind of trauma/chemo/ and autoimmune.
Mine is autoimmune. My sed rate, CRP, ANA and level c all elevated along with all anti inflammatory markers. I tested 13 out of 14 for rheumatoid arthritis but the doctors will not treat me for it. My grandmother, mother and my cousin had juvenile rheumatoid arthritis and his is now an adult. Bottom line why can’t they find something. I am allergic to gabapentin. My throat swells off and it triggers my asthma. Sometimes, when the pain gets so bad I have to take the gabapentin with 50 mgs of Benadryl along with 10 mgs of cortisone to get any sleep and get relief. Mine wakes me up at 2 am. (It’s like clock work) I have noticed eating something sweet a piece of cake or something will make it worse and caffeine to me makes the pain worse. Anything that stimulates the nerves. What have I noticed I am 61 and have basically ostracized my self away from people.
I don’t like lying and saying everything is fine when I don’t feel fine. If people can physically see someone disabled they understand but when they can’t see it it’s a different story. You tell someone it feels like your nerves are on fire they don’t understand. Why have we not made more progress in neuropathy? Is it because there is so many different types of neuropathy and causes?
We have all this cancer research and everything. Why not more research in this area? There is more help for diabetics then others so it seems. You listen to lectures and it’s primarily on diabetics. I feel like where do we fit in this research? If it’s medication induced then why does that certain medication cause neuropathy? I live in Texas and went to Boston to see Dr Anne Oaklander. I did learn some things from her. The shaking and tremors are caused from neuropathy.
I learned I should be seeing a neuromuscular neurologist, immunologist, rheumatologist and a neuromuscular physical therapist.
Some days my hands shake so bad and my legs that I can’t write, cut up my food or feed myself. I do not have the antigens for Parkinson’s. Dr Oaklander says this mimics Parkinson’s and MS.(multiple sclerosis) Then treat it as you do those two diseases. There is not much for Parkinson’s or MS.
Bottom line I understand your frustration. It seems like there should be some kind of relief or treatment. There is not very much treatment options on the Foundation of Peripheral Neuropathy’s website.
I was in IVIG therapy from age 10-18 until I fell off of my parents insurance. Some people says it works but if you stop it will progresses really fast. I wish we had more answers. My husband told me the other day I just don’t know how you live with that much pain. If it was me I would be crying all the time.
Here is my diagnosis severe axonal sensorimotor polyneuropathy, small fiber neuropathy along with dysautonomic neuropathy. I wish there was something to slow this disease down.
Sometimes, I listen to Scriptures on CD. It puts me to sleep laying there listening to scripture and it takes my mind off of the pain, I end up falling asleep to person reading the Bible. My parents bought the Bible for me on CD when I was young. Since, I am dyslexic I learn better verbally then reading.
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