I just noticed that the first link was broken from yesterday’s post that contained links to important Myeloma Beacon columns–and several other resources about peripheral neuropathy (PN). It is fixed if you would like more background information and helpful suggestions from past years.
Today, let’s take a look at ways that you and I can help make our peripheral neuropathy tolerable.
Saving suggestions for helpful prescription drugs for later, here’s a list of basic supplements which are often suggested to help ease PN symptoms:
- Vitamin Super B-Complex
- Vitamin E
- Folic Acid
- Magnesium tablets
- Alpha Lipoic Acid
- Acetyl L-Carnitine
- Cocoa Butter cream
I take most of these daily, including B complex, magnesium, alpha lipoic acid and L-glutamine.
The two most common prescription medications used include gabapentin and Lyrica.
Now let’s take a look at some additional ways my readers have suggested to help ease peripheral neuropathy symptoms over the years…
Many patients at UAMS (and others?) are on MetanX for PN. Me being one of them. It really works! It was first used for diabetic PN – but has been found to work for mm related PN as well. It is prescription cocktail of certain amounts vitamin B6, B12, folic acid. Warning: for some unknown reason, the generic doesn’t work – get the real thing……
If the neuropathy gets too annoying, ask your Doctor to put you on a small dose of nortriptline. It really works to ease the annoying rubber band feeling that neuropathy can give you.
I promised to send you a couple of “helps” that I use. They are Gabapentin, 600 mg am – 600 mg PM and a topical ointment, consisting of amit (2%), keta (0.5%) and lido (2%)… I rub this on my feet in the early evening and the results last through the night. Both of the above are prescription medications.
Our good friend, Danny, shared this with me soon after his recent stem cell transplant:
Helt alpha lipoic acid lipoic acid cream both help me. The lipoic acid cream, rubbed on my feet, helps most.
CAUTION: Alpha lipoic acid shouldn’t be taken on the day of a Velcade infusion. Best to avoid the day after as well. Enough lipoic acid can reduce Velcade’s effectiveness. Danny also reminds us that using L-glutamine along with melphalan isn’t a good idea. This includes within months before and after a SCT.
Fellow multiple myeloma patient and blogger Nick Van Dyk sent me this suggestion last year. Some have already been mentioned:
I take a compound called MetaNX which is simply prescription vitamin B supplements. This has been demonstrated to alleviate neuropathy in alzheimers patients. Interestingly, the generic did not work for me but the brand name does.
How about the prescription drug, Lyrica (pregabalin)? Several readers with severe PN related pain use that and say it helps a lot.
I use magnesium oil as a topical treatment. This seems to work better for some than others. That seems to be the case for most of these suggestions. It’s all about trial and error. One more thing about magnesium oil. As an added bonus, it can also help slow down night time cramping.
I also use magnesium oil on my feet and hands. And yes, it helps both my PN and cramping when I’m using Revlimid.
Gary, a fellow myeloma patient, regular reader and a researcher who actually works with gabapentin, suggested to me earlier this week that I spread-out my gabapentin capsule dosing, taking some with breakfast, at lunch and later in the evening.
If I left your suggestion out, please share it with us in the comment section.
Now, let me write a bit about my secret weapon against PN: Oxycodone.
I know, I know. Oxy is used primarily for pain control–and it’s use is quite controversial.
Originally prescribed for my bone and muscle pain caused by my undiagnosed multiple myeloma, oxy has the added bonus for me of controlling any pain–and most of the burning–associated with my peripheral neuropathy.
So yesterday when I mentioned how much discomfort laying in bed too long can cause for me, it is because the oxycodone has left my system that I last too the night before. Ditto for gabapentin. Without both of these drugs, I would barely be able to function.
I sometimes write about how disappointed I am in big pharma and the progress of myeloma research. It is far from a perfect system.
And yes, traditional American medicine and research doesn’t understand or recommend using enough natural alternatives and supplements. But thank God for so many of the drugs which help us live more productive lives!
That said, I don’t want us to forget that there are a number of myeloma patients who cannot control the pain and burning caused by their PN, no matter what they try. Like the myeloma itself, PN seems to present itself differently in all of us. Most will benefit from some combinations of the drugs and supplements mentioned above. But a large minority will not respond as well or at all.
My heart goes out to all of you! I just hope a few of these suggestions might help dampen the symptoms you experience as a result of your myeloma therapy.
Try and feel good–and keep smiling! Pat