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

@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.

Mike and Jeff,
I'm 58 and/but working with some similar issues that the two of you are working with namely spine and PN.
I've read the entire thread above this and just wanted to ask a couple questions and add some info. I also applaud both your work in taking care of yourself and agree that there is an enormous hole in the medical field where multiple issues come together. The specialists only know what they specialize in and the general doc will just keep bouncing us back to the various specialists. It's pretty clear there a vacancy there! Maybe one day there will be a coordinator who is willing to look at the various pieces of information and attempt to have a larger view. In the mean time let's keep working the problems!
I'm very curious about the dialogue about cholesterol. There's a question as to whether the meds can cause the neuropathy. My concern there regarding the docs and the patients is this, if we have the onset of the cholesterol issues then take meds for it and later find a causal link between the meds and the neuropathy we might be missing that the meds are addressing some cholesterol issues but not another related issue that causes neuropathy and occurs with the rise in cholesterol? This is just food for thought. Sorry to further confuse it but. . .
A question I have related to this is that of exercise and diet. I essentially had slightly elevated blood sugar, slightly poor cholesterol, fatty liver and other similar metabolic issues. Through exercise and diet changes I dropped my blood sugar and maintained a lower lever for several years now. I also eliminated the high cholesterol issues particularly triglycerides. The one thing I haven't been as successful at doing is raising my HDL (good cholesterol.). Mostly my Doc and Nurse practitioner agree that I don't need meds. I've read a lot about this though and it seems that low HDL is as connected to negative outcomes as other high cholesterol. Perhaps Low HDL is not 'AS' implicated in studies but it's in the pack of issues. My HDL bounces between 20 and 38ish. From what I've read this is low and can contribute to a cardiac event. One problem is that the meds that attempt to raise HDL and do so successfully haven't had an impact on negative outcomes so no-one is pursuing it.
I'm left with the only way I know how to improve it with is diet and exercise. Several years ago despite 'mild emphysema' I was training for a triathlon. I managed to nudge my HDL up into the 50s which for me age (58) is at least manageable. Now with my stenosis and PN I'm 'Running' out of ways to jack my HDL up. I can swim but not bike or run. Swimming is a much harder way to get the HDL up but I'm giving it a heck of a battle.
There was a study in Japan linking Low HDL to stenosis mostly in the thoracic. While stenosis in the cervical and lumbar had a higher correlation with being heavy.
Have you Jeff and Mike done much exercise throughout your health/spine journeys? I know I'm asking gentlemen who are a precious decade older than me so I'm well aware exercise gets harder. I just would love to know your stories in that regard.
You get a medal if you actually read to this point!!
Thanks
Darren

With a lot of the conversation about statins and cholesterol control I'm curious about a few things.

Hi, Darren. At the time I wrote the original post, I was taking a supplement called MetanX that my podiatrist had prescribed for neuropathy. The next time I saw my PCP for a wellness check, he did blood work and checked the vitamins for me again at my request. The Vitamin B6 was very high.... and I knew the MetanX contained some Vitamin B6... but I wanted to give it a try. Well, I noticed no difference in my neuropathy symptoms and the B6 was way up, so I stopped the MetanX. I do continue to take R-Alpha Lipoic Acid and Benfotiamine, Acetyl L-Carnitine, and Magnesium supplements. A few weeks ago, I was having some GERD issues, and I thought perhaps the Alpha Lipoic Acid might be contributing.... so I stopped taking it. After 5 days, my feet were suddently getting more and more numb it seemed. So I went BACK on the R-Alpha Lipoic Acid, thinking that the sudden withdrawal from it was worsening my neuropathy and I didn't want that. I do make a point of taking it with food now, and the GERD seems to be abating.
Now, back to your question about cholesterol, I, too, have a lower than desired level of HDL... and my cardiologist has me taking Rosuvastatin, Zetia, Repatha and Vascepa. The Repatha dropped my triglycerides in half, which was great. The Vascepa has raised my HDL to the 50s... so I'm happy with that.
As for how cholesterol may impact neuropathy, I have no idea on that. Perhaps someone else knows of a correlation of some kind between cholesterol and neuropathy. We are all different, obviously. My wife is 70. I am 73. I have been on cholesterol meds since my thirties. She was JUST put on a statin this year. So her numbers are MUCH better than mine. And, of course, our bodies actually need a certain amount of cholesterol for body functions. I've been seeing notices about these pop up clinics that come to your area occasionally to check you for some OTHER type of cholesterol that supposedly can also be dangerous, but that doctors just found out about. These clinics offer to check your blood for free to see if you need to see a doctor about that cholesterol.... whatever it is.
The first year after my back surgery, I was going to PT several times a week, and I was walking for exercise. In the summer, we have a pool and I swim each day for exercise. I continued to walk regularly last winter. Since we closed the pool in October, I have not gotten back into my walking habit and I need to. Your posting will encourage me to do just that. There are some nice walking circuits in my neighborhood.... and there is an old mall that is still maintained and has a few stores.... and it's great for walking laps indoors. I can go to the gym nearby and ride their NuStep recumbent bikes without any trouble....

I hope what I've shared here may help in some way. If you have any other questions, please feel free to ask. I am so grateful to have found this Support Group through Mayo. It means a lot to be able to share with others who are on a similar path. We are all different, so what works for one may not work for another. At this point, I'm doing the best I can for me. Now that the holidays are over, I definitely need to get back to my walking exercise and lose some of the pounds I so joyfully added during the season. 🙂

Best wishes!
Mike

Mike,
Love that you added, 'so joyfully added' to your comment about pounds and food. So important.
For now just thank you for returning answers to my questions! It's very helpful. I suspect I'll be back in touch with you as that spinal and PN overlap is shared by us. It's getting late here in CT so will go have dinner with wife and kids. I hope you stay strong and at peace as much as possible Mike and if you don't I'm happy to be one those who will listen to your sorrows or victories. Darren