← Return to Metanx, Repatha, Statins and making sure doctors keep check...

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@darrenp

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.

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Replies to "Mike and Jeff, I'm 58 and/but working with some similar issues that the two of you..."

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