[mjscottdvm]

Neuropathy pain - suggestions other than gabapentin?

by mjscottdvm on Sun Mar 29, 2015 11:55 pm

Any suggestions outside of gabapentin (Neurontin) to help cope with the pain?

My husband is more or less bedridden at this point, secondary to neuropathy pain in his feet and legs. He had terrible side effects when on Cymbalta (duloxetine) and amitriptyline (Elavil) and had to stop even though they seemed to be helping the neuropathy.

His neuropathy developed after starting VRD-PACE protocol when his myeloma was no longer responding to just the VRD. Thank you for any suggestions.

(VRD-PACE = Velcade, Revlimid, dexamethasone - cisplatin, doxorubicin, cyclophosphamide, and etoposide)

[JimNY]

Re: Neuropathy pain - suggestions other than gabapentin?

by JimNY on Mon Mar 30, 2015 10:15 am

Is there any reason you do not want to try gabapentin for your husband's neuropathic pain?

A number of people here in the forum have said that Lyrica (pregabalin) worked well for them.

[mjscottdvm]

Re: Neuropathy pain - suggestions other than gabapentin?

by mjscottdvm on Mon Mar 30, 2015 2:02 pm

He is already on gabapentin and it is not helping.

[Dano]

Re: Neuropathy pain - suggestions other than gabapentin?

by Dano on Mon Mar 30, 2015 5:07 pm

Maybe the reason the gabapentin is not helping is because the dose is too low. I know the recommended maximum daily dose is 1800 mg (in divided doses). However, many people with severe peripheral neuropahty (PN) will not see relief with gabapentin until the dose is ap­proach­ing twice that.

I have severe PN and I was at 2700 mg before I noticed any sign of improvement. I am currently taking 3300 mg. The effects of gabapentin are not immediate and will take a few weeks. Dr. H. Landau posted about this in the Beacon forum early this year. She said she often has patients taking up to 3600 mg before they see efficacy with gabapentin. The drowsiness often seen with higher doses can be overcome with slow titration of the drug as you increase the dose.

[Anonymous]

Re: Neuropathy pain - suggestions other than gabapentin?

by Anonymous on Mon Mar 30, 2015 9:02 pm

Hi,

I chose not to use gabapentin, just did not want to keep pouring more and more drugs at the problem, so I checked on the Dana Farber website and they recommend alpha lipoic acid. I take Natrol 600 mg once a day and also at night rub Palmers cocoa butter with vitamin E, again from their website, and both have helped me.

Good luck.

[Beacon Staff]

Re: Neuropathy pain - suggestions other than gabapentin?

by Beacon Staff on Mon Mar 30, 2015 9:10 pm

Just as a quick follow-up to the previous posting, you can find a long list of recommendations regarding supplements and other approaches for peripheral neuropathy from Dr. Paul Richardson of Dana-Farber in this forum posting.

Beacon Medical Advisor Dr. Ken Shain of the Moffitt Cancer Center also has made some recommendations here in the forum that you may want to consider. See, for example, this posting he made in June of 2012.

Just as a quick reference for anyone who is interested, this link will take you to the more than 50 peripheral neuropathy-related discussions here in the forum.

That link, by the way, is one of the many quick links to forum discussions about specific treatments and side effects that you'll find in the "Useful links to existing forum discussions" posting that's always at the top of the Treatments & Side Effects section of the forum.

[mjscottdvm]

Re: Neuropathy pain - suggestions other than gabapentin?

by mjscottdvm on Tue Mar 31, 2015 1:31 am

Thank you!

[Joneman]

Re: Neuropathy pain - suggestions other than gabapentin?

by Joneman on Tue Mar 31, 2015 7:29 pm

I have neuropathy and tried gabapentin, Lyrica, and a few other drugs. Nothing worked long term until I switched to morphine sulfate extended release (MS Contin). I have been using this twice a day for 4 years.

[ben]

Re: Neuropathy pain - suggestions other than gabapentin?

by ben on Tue Mar 31, 2015 10:03 pm

I've experienced pain relief from both Cymbalta and Kepra.

[Dano]

Re: Neuropathy pain - suggestions other than gabapentin?

by Dano on Fri Apr 03, 2015 10:21 am

Reading the posts, it's obvious the treatment choices and options for PN are about as varied as the manifestations of our disease.

Although I am not an advocate of alternative medicine, I did try alpha lipoic acid and B-complex, with absolutely no success. I'm currently trying a compounded cream of amitriptyline, lidocaine and ketamine. I have been using it for three weeks now. My feet are softer, but I've seen no addi­tional relief from the PN.

As with most of us, my PN is worse in the evening, and at times I will take 15 mg - 20 mg of oxy­codone IR, which will take the edge off the sharpness of the pain and make for a better night's sleep. My PN is usually better in the morning.

I am currently taking 3,600 mg of gabapentin (Neurontin) daily in thee divided doses, and I am seeing some improvement. When I reported the increased gabapentin dose to my neurologist, he told me he has patients taking up to 4,800 mg daily, and that the drug is safe at these higher doses.

Just like treating myeloma, one size does not fit all when it comes to peripheral neuropathy. Keep your options open and don't hesitate to try something else if current therapy is not working.