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International Myeloma Foundation Peripheral Neuropathy Patient Focus Group

posted Dec 2, 2010, 9:14 PM by David W.   [ updated Dec 22, 2010, 11:37 PM ]
from Pat's Multiple Myeloma Blog

The group enthusiastically provided input about what made our symptoms worse. Cold, poor fitting shoes and standing for long periods of time topped the list.  Several mentioned their PN was worse at night. 

As far as suggestions which improve PN, gabapenten was most often mentioned. Vitamin B and alpha lipoic acid were also used by a majority of patients.

Both nurses mentioned Cybalta might help. No one in the group was using this drug--partially because insurance often doesn’t pay for Cybalta or Lyrica for PN unless it is related to diabetes.

Alternative treatments mentioned included massage and acupuncture. Another group member mentioned cocoa butter helped. I mentioned using topical magnesium might also help, especially for cramping. 

Kataline and Amitriptyline can be effective numbing painful neuropathy when applied to the feet after soaking them in warm water. Teresa and Tiffany noted this combination may not be available everywhere and would require a prescription. 

Safety (slipping in the shower, checking water temperature before bathing, injury doing simple things like trimming toe nails and falling) were mentioned as concerns.

Both nurses reminded us how important it is to maintain a relationship with a primary care physician--and that they are aware of your PN and symptoms.


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