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Pat’s Place: Tips For Battling Peripheral Neuropathy, From A Patient's Perspective

By: Pat Killingsworth; Published: May 6, 2010 @ 8:45 am | Comments Disabled

Peripheral neuropathy (PN) is a common side effect of a number of chemotherapy drugs used to treat multiple myeloma. Symptoms range from tingling or numbness of the toes, fingers, feet, hands, or legs, to severe pain—and everything in between.

Like many multiple myeloma patients, I suffer from PN. Some of it began even before I began treatment, most likely caused by nerve compression in and around my damaged vertebrae. Once I began treatment, it rapidly got worse.

My hands became so unsteady it was (and still is) difficult for me to write or print. My hands, feet, and legs from the knees down often feel like they are asleep.

My PN is often worse towards the end of my Revlimid [1] (lenalidomide) cycle. It tends to improve after I stop taking the drug for a week or two each month. It improves, but is never gone.

Fortunately for me, I have not experienced any nerve pain associated with my PN. Other patients are not so lucky. One patient described the pain from their PN to be like “hot needles repeatedly being stuck into the nerves of their feet.”

I have also been told by my fellow patients that traditional pain killers or narcotics do little to dull the pain. Instead, these patients turn to nutritionalists, acupuncturists, homeopathic doctors, and other more conventional medical experts, hoping to find ways to lesson the symptoms.

Sometimes traditional or unconventional methods help. Often they do not. Most patients can achieve some relief by trial and error.

Here are some suggestions for improving PN symptoms that I have received from doctors and my fellow myeloma patients over the years:

Gabapentin (Neurontin) - Gabepentin is a prescription medication. It is relatively inexpensive and, according to two of my doctors, very safe. I know a number of patients who take it and swear by the results. I take it, and it helps me a lot. It barely works for others. Slowly increase the dose until you see results.

Neuragen - The patient who wrote me about this gets it at Walgreen's. The cost is around $30.00, but several magazines (AARP, Smithsonian, etc.) have $5.00 coupons. You can use it as much as four times a day, but this patient, named Bonnie, usually only used it in the morning.

Alpha Lipoic Acid - Doses vary. Check with your doctor, but be careful: Clinical studies have hinted alpha lipoic acid may interfere with the effectiveness of Velcade [2] (bortezomib).

Medrol (methylprednisolone) - Medrol is a synthetic (man-made) corticosteroid that may help reduce inflammation of the nerve linings.

Vitamins – Vitamins can help, especially vitamin B12, vitamin Super B-Complex, vitamin E, vitamin D3, and folic acid.

Magnesium - Magnesium can be taken orally or rubbed on the skin of affected areas. Several brands of magnesium oil are available for topical use. Several patients I know rave about magnesium oil. They massage the oil on their legs when they get up in the morning and before bed.

Heat Shock 90 Inhibitors - Dr. Ken Anderson, a well known multiple myeloma expert from Boston, suggests that if you add a heat shock 90 inhibitor you can decrease neuropathy and enhance the efficacy of Velcade.

Exercise - Exercise every day. Keep moving! Walk, swim, do yoga, or ride a bike.

Maybe our readers can suggest a few more traditional or home remedies for peripheral neuropathy.

One thing is certain: Nearly every multiple myeloma patient suffers from some degree of PN post diagnosis. Hopefully you can find something that works for you.

Feel good and keep smiling! Pat

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URL to article: https://myelomabeacon.org/headline/2010/05/06/pats-place-tips-for-battling-peripheral-neuropathy-from-a-patients-perspective/

URLs in this post:

[1] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[2] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

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