1. < Neuropathy

Do not take gabapentin, makes it worse

Posted by elvans40 @elvans40, Mar 22 2:28pm

I have taken gabapentin and Lyrica. I would advise you not to take either as they can sometimes make symptoms worse. Also increase anxiety if you have GAD as I do

Interested in more discussions like this? Go to the Neuropathy Support Group.

jeffclaussen | @jeffclaussen | Mar 24 11:49am
In reply to @harley22 "Well if Gabapentin works 50% of the time, I wasn’t in that 50% because it did..." + (show)
@harley22

Well if Gabapentin works 50% of the time, I wasn’t in that 50% because it did nothing for the pins and needles in my feet and legs.
Gave it over a year, and nothing!

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I don't believe the oncologist that told me that and I don't believe my personal physician either. It appears the whole medical field is pushing this gabanpentin like it's the new miracle drug and I have as yet found anyone who says it works for anything except maybe pain relief. When I mentioned this to the nurse at my Dr.s office she said, "We consider numbness to be pain" They don't want to be wrong and ya can't get a straight answer from any of them... at least the ones I talked to thanks for responding!

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jeffclaussen | @jeffclaussen | Mar 24 12:11pm
In reply to @johnbishop "Welcome @jeffclaussen, Sorry to hear that you have the neuropathy numbness from your chemo treatments but..." + (show)
@johnbishop

Welcome @jeffclaussen, Sorry to hear that you have the neuropathy numbness from your chemo treatments but I'm happy to hear you are not having the pain also. The numbness is bad enough by itself. I have seen zero research that gabapentin helps with numbness and I have not heard anyone with the neuropathy numbness say it helped but there may be someone out there with a positive experience. Before I was diagnosed I had been dealing with the neuropathy numbness that started in my toes and had been in my feet for more than 20 years. I decided to see if I could get a diagnosis and/or treatment. My primary care doctor gave me gabapentin which I took for a month and it did absolutely nothing so I stopped taking it. At my next appointment I discussed the gabapentin with her and that it didn't help. She went away for a few minutes and brought in others on her Mayo Clinic doctor team. After a few short minutes of talking to me about my numbness symptoms they all concurred that gabapentin does nothing for numbness. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I think you might find the following discussion helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

Another thing that might be helpful is discussing supplements that may help with your doctor. Here's some information that explains more:
--- Dietary Supplements in Chemotherapy-Induced Peripheral Neuropathy: A New Hope?:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8838672/

Have you looked into any complementary or alternative treatments?

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thanks for your reply. the oncologist told me he got his info from Loprinzi studys. I couldn't find anything there to support his claim of 50% either.. or 15% for that matter. As far as suppliments go, I read where vitamin B12 was good to take, my primary Dr said unless your deficient in that vitamin there's no need to take it, sounds reasonable. On a facebook page a number of people recommend R-Lipoik Acid. Been taking that for 2 months, no results. I picked up some nonprescription cream... Nerve Renew ... just started this , thought I would give it a try. Also foot and body massage twice a month. What's really frustrating is I know how great a foot massage is supposed to feel but I can't feel anything... try explaining that to the chinese masseuse who doesn't speak English. thanks for the links, I'll check them out

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ngeorge4 | @ngeorge4 | Mar 24 1:27pm
In reply to @johnbishop "Hello @elvans40 and @ngeorge4, I would like to add my welcome to Connect along with @harley22..." + (show)
@johnbishop

Hello @elvans40 and @ngeorge4, I would like to add my welcome to Connect along with @harley22 and others. I only took gabapentin for a short period of time (less than a month) and stopped taking it after a short discussion with my primary care team about gabapentin for neuropathy when I only have numbness and no pain. It doesn't help with the numbness so I stopped taking it. The different side effects can be bad for some of us while others benefit from it's use. Side effects are something each of us need to have a discussion with our doctors so that we know what to expect along with things we may be able to do to lessen any side effect.

@elvans40 do you mind sharing a little more about your neuropathy diagnosis and symptoms? Have you discussed any other possible treatments with your doctor?

@ngeorge4 I know it must be difficult for you gaining 60 pounds and have the doctor just say we can deal with it later. Are you able to have a discussion with your doctor or care team and ask for suggestions that can help you with some suggestions on what you can do to help stop the weight gain or lose what you have gained?

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Yes I’m on medication to help lose weight and I was doing great until they put me back on lyrica recently. It is frustrating for sure.

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raebaby | @raebaby | Mar 25 2:56pm

Gabapentin works well for the neuropathy I developed after chemo for breast cancer. It cuts the stinging and "dead" feeling in my feet. Sometimes it even gives me a high .I'm 82 years old.

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stevek1963 | @stevek1963 | Mar 25 6:19pm

Gabapentin eliminated all of my pain. It truly was a life saver. It takes a few weeks before it starts working. The dosage gets increased slowly over time. It does nothing for numbness and I don’t believe it is supposed to. I still take it today, a year and a half later and it still works. You should have this discussion with your physician. I had my doubts at first but thank God I have it to take instead of opioids or NSAID’s.

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1 reply
beeclee | @beeclee | Mar 26 8:34am
In reply to @stevek1963 "Gabapentin eliminated all of my pain. It truly was a life saver. It takes a few..." + (show)
@stevek1963

Gabapentin eliminated all of my pain. It truly was a life saver. It takes a few weeks before it starts working. The dosage gets increased slowly over time. It does nothing for numbness and I don’t believe it is supposed to. I still take it today, a year and a half later and it still works. You should have this discussion with your physician. I had my doubts at first but thank God I have it to take instead of opioids or NSAID’s.

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So glad you did not experience any side effects. I stopped because of the foggy , zombie like feeling I experienced. I finally realized the benefits did not outweigh the side effects.

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Mar 27 2:03am
In reply to @beeclee "So glad you did not experience any side effects. I stopped because of the foggy ,..." + (show)
@beeclee

So glad you did not experience any side effects. I stopped because of the foggy , zombie like feeling I experienced. I finally realized the benefits did not outweigh the side effects.

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Quite a few of the meds I've tried had that effect on me, both neuropathy meds and pain meds. My wife notices my reduced cognitive function when I don't sense it, so when I notice it, it has to be pretty bad! Gabapentin had that effect on me, too. Bummer. When I started taking Lyrica, I thought I'd found my magic cure, until one day, after a couple of weeks, I became incoherent and couldn't finish a sentence. 3 days in the hospital.

For so many of us the search keeps going on and on. The fortunate ones find relief in the standard neuropathy meds. Have you been able to find one that works for you? Believe me, the list is incredibly long!

Jim

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1 reply
stevek1963 | @stevek1963 | Mar 27 5:25am

In my case, being a little foggy at times far outweighed the pain I was suffering from. I ended up getting used to it and have slowly reduced the amount I take. Different medicines sometimes work differently for people. I truly hope you find the one that works for you. Good luck in your search!

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k1mmer | @k1mmer | Mar 27 8:48am
In reply to @jimhd "Quite a few of the meds I've tried had that effect on me, both neuropathy meds..." + (show)
@jimhd

Quite a few of the meds I've tried had that effect on me, both neuropathy meds and pain meds. My wife notices my reduced cognitive function when I don't sense it, so when I notice it, it has to be pretty bad! Gabapentin had that effect on me, too. Bummer. When I started taking Lyrica, I thought I'd found my magic cure, until one day, after a couple of weeks, I became incoherent and couldn't finish a sentence. 3 days in the hospital.

For so many of us the search keeps going on and on. The fortunate ones find relief in the standard neuropathy meds. Have you been able to find one that works for you? Believe me, the list is incredibly long!

Jim

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I did 30 rounds of chemo and have terrible neuropathy 2 years post treatment. I've recently started doing accupuncture and use a tens unit at night. I also take CBD oil and the following supplements: P5P, Alpha lipoic Acid, Fish oil, and calcium with my magnesium. I have cut my gabapentin almost in half and continue to feel better. Don't give up, keep trying everything until you find something that works.

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2 replies
charlotta98 | @charlotta98 | Mar 27 11:14am
In reply to @jeffclaussen "I don't believe the oncologist that told me that and I don't believe my personal physician..." + (show)
@jeffclaussen

I don't believe the oncologist that told me that and I don't believe my personal physician either. It appears the whole medical field is pushing this gabanpentin like it's the new miracle drug and I have as yet found anyone who says it works for anything except maybe pain relief. When I mentioned this to the nurse at my Dr.s office she said, "We consider numbness to be pain" They don't want to be wrong and ya can't get a straight answer from any of them... at least the ones I talked to thanks for responding!

Jump to this post

Thank you for your reply.
Gabapentin works for my cervical neck pain but not for my peripheral neuropathy. I’m sick to death of neurologists pushing this drug on me because it doesn’t work.
Ditto for duloxetine. All that drug does is cause stomach issues & weight gain.
A new, promising drug called Nucynta, is not covered by insurance. I priced its average at approximately $600 per month.
I’m sick of this disease.

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