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Treating CIPN
A MyMyelomaTeam Member asked a question 💭
posted March 24
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A MyMyelomaTeam Member

Steve, I take a small dose of morphine and pregabolin twice a day. It took years to finally get some relief from the painful neuropathy. I tried every thing that is talked about from vitamins, exercise, acupuncture, cell stimulation, various other drugs, even hypnosis to try to sleep. There is so much we go through to try to get a little relief, while handling the acceptance that we have MM and all the treatments we have to take to keep our numbers in an acceptable range. I have a great doctor and that is so important. I pray that you get some relief from your CIPN. Stay strong and positive. Your friend, Marcia 🌷

posted March 24
A MyMyelomaTeam Member

Chemo induced peripheral neuropathy. I take b Complex and Alpha Lipoic acid. Tight glucose control if you are diabetic. Don't drink or smoke because that makes it worse. You might have to switch treatments. Exercise and a healthy diet is supposed to help as well. Several different drugs you can try for the pain. People on here mention, Lyrica, Gabapentin, Cymbalta. There are several others. I hope you get relief 🌻

posted March 24
A MyMyelomaTeam Member

I had 4 rounds of VRD from April to July 2023 and an SCT the end of August. The velcade caused severe neuropathy. It appeared by the third round of vrd but it just kept getting worse even after the velcade was stopped. It was 24 hour torture. I couldnt walk. I could not even touch my feet. My balance was affected. Burning, electric jolts below the knees 24/7. I lost the ability to flex my toes on my left foot and lost tone in my ankles so they turned under me. By November, I was losing hope it would improve or even stop getting worse. Gabapentin didnt help. I was sent to palliative care. I started lyrica and methadone. Those two stopped the electric jolts and burning completely. Only numbness was left. I tolerate them very well. (Note: lyrica is best started at low dose and increased over a month or more to avoid the side effects). At the same time, I started taking one Life Extension Super R-Lipoic Acid and a basic B-Complex (not a megadose) and two Doctors Best high absorption Magnesium daily. The supplements seemed to stop the progression and reverse some of the damage. I have regained strength in my ankles, some feeling, and I can walk well enough to do my daily tasks. My balance much better-- almost normal. The R-Lipoic Acid I take is the active form of R-Lipoc Acid that is more commonly used for neuropathy. I believe it works better.

posted March 24

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