[Nancy Line]

Severe peripheral neuropathy - what to do about it?

by Nancy Line on Sun Jun 28, 2015 8:45 am

My husband is suffering with severe peripheral neuropathy after a stem cell transplant two months ago.

HIs feet are discolored and he can hardly walk. The pain seems to worsen day by day.

He is undergoing acupuncture and taking prescribed drugs.

Any suggestions?

Nancy

[EF11]

Re: Severe peripheral neuropathy - what to do about it?

by EF11 on Sun Jun 28, 2015 12:29 pm

Has he reached a maximum dosage of the "prescribed dugs"? My husband did not respond to gabapentin at lower dosages but 1,800 mg/day seems to do the trick. His transplant doc said he could go higher, up to 2,400 mg/day. Oxycodeine helped for the pain in the interim until the higher dose took effect.

Good luck.

[mjscottdvm]

Re: Severe peripheral neuropathy - what to do about it?

by mjscottdvm on Sun Jun 28, 2015 12:54 pm

This is ongoing for my husband...he was on max dose of gabapentin and oxycontin without help. His myeloma specialist added in a supplement called Metanx (prescription) that helped. Switching from oxycontin to methadone has also worked wonders - methadone works on an additional receptor that most opiods do not. The methadone was a suggestion from his palliative care doctor - seeing a palliative care doctor has also helped out if you have access to this kind of resource.

[RE2255]

Re: Severe peripheral neuropathy - what to do about it?

by RE2255 on Fri Jul 03, 2015 6:55 am

This is my first attempt on participating in a forum like this. Please note that my comments are based on my own experiences as I can best remember (chemo brain) and what worked for me. I'm still experiencing neuropathy in my feet 2 years post transplant. In fact last week was the first time that I was able to stand barefoot on a padded shower mat and take a shower.

Here is a short list of things that helped me:

• I purchased an adjustable mattress bed allowing me to elevate my feet.
• Tenting the sheets so that nothing touched my feet.
• Cans and cans of topical sprays - with aloe, coconut oil, and various numbing agents.
• If you are getting up every 2 hours to urinate- get a urinal to reduce trips to bathroom.
• Memory foam inserts in all footware.
• Crutches and canes to help walking.
• Find ways to not focus on the pain. (Note -I also had a spinal fusion 6 months before being diagnosed with multiple myeloma. Looking back had I not had the operation and the usual following checkups, we might not have found the cancer as early as we did.) I also had troubles with balancing the side effects of the pain killers but that is another issue and I'm getting tired.
• Lastly and most importantly surround yourself with people that are supportive and limit contact with those that add drama and stress.

[Bar-none]

Re: Severe peripheral neuropathy - what to do about it?

by Bar-none on Fri Jul 03, 2015 9:34 am

Hi,

Having fought an ongoing battle with neuropathy, mostly from MS but exacerbated by Velcade, I've found Lyrica to be much more effective than gabapentin in my case. Also I was able to start riding a stationary bike, which believe it or not really helps the pain for a few hours afterwards better than drugs.

Best! BN

[Castaway]

Re: Severe peripheral neuropathy - what to do about it?

by Castaway on Sat Jul 04, 2015 4:03 pm

Sorry to hear about the severe PN. I have not yet had my transplant but have been on Velcade which caused my PN. I also was prescribed Gabapentin. It did basically nothing to help.

On my own I went to a podiatrist because I also have a high arch and wanted to see if I could get more support for my feet. He casted my feet and had some inserts made for me. He also suggested some New Balance shoes that would help also.

This really helped support my feet but the PN was still there. My oncologist finally got Lyrica approved through our insurance. I have to say that it works. For me it took only a 24-hour period to feel relief from the PN. I have since been on a maintenance of Revlimid and Velcade and the PN seemed to be much less.

I recently stopped taking the Lyrica. I still have some numbness in my toes. But nothing that I would need to use Lyrica. My insurance would not approve Lyrica until I tried the Gabapentin for a few months. I can't say enough about how the Lyrica worked for me.

Hope this helps a little.