I am on Neurontin [gabapentin] 700mg three times a day for neuropathy. I am getting relief only about 95% of the time. I take ibuprofen or Excedrin [aspirin + caffeine] as an adjunct. I also have codeine, but that really doesn't help.
Is this the type of neuropathy that could be helped by immune globulin?
I am really debilitated by this.
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Lin516 - Name: Lin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/09/2013
- Age at diagnosis: 57
Re: Neuropathy treatment - what options are there?
Probably not much help with immune globulin if this is related to myeloma treatment.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Neuropathy treatment - what options are there?
Sorry to hear about the neuropathy you are experiencing.
There have been a lot of discussions here in the forum about neuropathy. If you review them, you'll find many of them include what people are taking for the neuropathy and what works and does not work.
If you go to this link, you'll see a list of all discussions here in the forum that have "neuropathy" in their subject title.
(The list at the link was created using the forum's search box ... it's what you'll see if you type "neuropathy" into the search box and hit enter. In general, forum searches work best when you just use one or two keywords that you're looking for in the titles of forum discussions.)
Good luck ... and please let us know if you find something that works better for you (and also what is causing your neuropathy ... is it due to treatment that you're currently receiving?).
There have been a lot of discussions here in the forum about neuropathy. If you review them, you'll find many of them include what people are taking for the neuropathy and what works and does not work.
If you go to this link, you'll see a list of all discussions here in the forum that have "neuropathy" in their subject title.
(The list at the link was created using the forum's search box ... it's what you'll see if you type "neuropathy" into the search box and hit enter. In general, forum searches work best when you just use one or two keywords that you're looking for in the titles of forum discussions.)
Good luck ... and please let us know if you find something that works better for you (and also what is causing your neuropathy ... is it due to treatment that you're currently receiving?).
Re: Neuropathy treatment - what options are there?
I am not trying to sound discouraging, but 95% of the time is a far better result than I got using Neurontin for neuropathy. I never did find a drug that was a silver bullet for dealing neuropathy, everything seemed to only help a little bit.
Ibuprofen and Vicodin were no help what so ever. The only thing that worked really well was not a drug but lap swimming. It was uncanny how the morphine and Dilaudid I took would help just some yet when I starting swimming the pain would nearly go away completely on the first few laps.
Unfortunately, the neuropathy did return again shortly after getting out of the pool, but I think it still helped for a while afterwards still. At least it was an activity that I could do with feeling any pain and was good exercise, which I needed. It sure was a lot better for me than lying on the couch dealing with the pain. There have been a number of other posts on the Beacon from people who found that swimming helped them a lot too. I am not sure anyone understands why this is, but it is not just me.
I found neuropathy pain was worse at night when I was lying still and my mind was not occupied by other activities. Is this the case for you? If I was busy doing something during the day the pain would subside and be in the background at a tolerable level. Sometimes I would have to get up in the night and pace around the house some to get the pain to subside.
Wearing compression socks that squeezed the lower leg helped some too but again the only thing that worked really well was swimming which was temporary.
Ibuprofen and Vicodin were no help what so ever. The only thing that worked really well was not a drug but lap swimming. It was uncanny how the morphine and Dilaudid I took would help just some yet when I starting swimming the pain would nearly go away completely on the first few laps.
Unfortunately, the neuropathy did return again shortly after getting out of the pool, but I think it still helped for a while afterwards still. At least it was an activity that I could do with feeling any pain and was good exercise, which I needed. It sure was a lot better for me than lying on the couch dealing with the pain. There have been a number of other posts on the Beacon from people who found that swimming helped them a lot too. I am not sure anyone understands why this is, but it is not just me.
I found neuropathy pain was worse at night when I was lying still and my mind was not occupied by other activities. Is this the case for you? If I was busy doing something during the day the pain would subside and be in the background at a tolerable level. Sometimes I would have to get up in the night and pace around the house some to get the pain to subside.
Wearing compression socks that squeezed the lower leg helped some too but again the only thing that worked really well was swimming which was temporary.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Neuropathy treatment - what options are there?
Ditto Eric's comments.
Gabapentin did nothing for me--but I did learn that 2700 mg is the upper daily limit.
Elavil ( Amityptilline) is an old cheap drug. It worked better than anything, for me. The Side effects (constipation, etc) led me to use it only one-two nites a week. I hated the Sleepy feeling the next a.m.
I am already tired enough due to multiple myeloma and the Revlimid.
A Heated sock full of uncooked rice, helped relax my Twitches of pain and feeling of cold below the knee--especially in Winter.
Good luck.
Gabapentin did nothing for me--but I did learn that 2700 mg is the upper daily limit.
Elavil ( Amityptilline) is an old cheap drug. It worked better than anything, for me. The Side effects (constipation, etc) led me to use it only one-two nites a week. I hated the Sleepy feeling the next a.m.
I am already tired enough due to multiple myeloma and the Revlimid.
A Heated sock full of uncooked rice, helped relax my Twitches of pain and feeling of cold below the knee--especially in Winter.
Good luck.
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Rneb
Re: Neuropathy treatment - what options are there?
I had neuropathy in my feet prior to treatment for multiple myeloma. The neurologist put me on a B complex vitamin since it was comparatively mild. I was a bit skeptical, but it did help and it never got worse prior to my treatment. While the treatments did aggravate it, particularly the pins and needles aspect of it, it has since retreated to pre-treatment levels and I'm still only taking the B complex vitamin for it. While my feet do hurt after going on long walks or mowing the lawn, I can't say that it's unbearable. I'm only posting this because I have yet to see anyone post anything about this type of treatment. Has anybody else been prescribed B complex for neuropathy?
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Neuropathy treatment - what options are there?
I had severe peripheral neuropathy (PN) right after my RVD [Revlimid, Velcade, dexamethasone] induction therapy last October. The pain in my feet and ankles was quite severe and often required Oxycontin [oxycodone] for me to sleep. I couldn't walk or be on my feet for very long.
I started taking gababentin 300 mg three times a day plus alpha lipoic acid. I also started taking vitamin B supplements starting in January.
It has gradually become much better and now it is more of an annoyance than a debilitating condition. I went to see a neurologist who evaluated my condition and he agreed with the supplements I was taking. He also inferred that by, taking vitamin B supplements, it may have prevented it from getting as bad as it did. He indicated that PN heels very slowly, but he thought it would eventually heal.
Right now I pretty much can do anything I want and I don't have those pain spikes any more. It just hurts now and then if I am on my feet all day, but not like it did nine months ago.
So that is my story. Hope it helps.
I started taking gababentin 300 mg three times a day plus alpha lipoic acid. I also started taking vitamin B supplements starting in January.
It has gradually become much better and now it is more of an annoyance than a debilitating condition. I went to see a neurologist who evaluated my condition and he agreed with the supplements I was taking. He also inferred that by, taking vitamin B supplements, it may have prevented it from getting as bad as it did. He indicated that PN heels very slowly, but he thought it would eventually heal.
Right now I pretty much can do anything I want and I don't have those pain spikes any more. It just hurts now and then if I am on my feet all day, but not like it did nine months ago.
So that is my story. Hope it helps.
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Pjorg45 - Name: Paul Jorgensen
- When were you/they diagnosed?: May 1013
- Age at diagnosis: 68
Re: Neuropathy treatment - what options are there?
Thank you everyone for your thoughtful replies! After reading my initial post, I may have exaggerated on the 95%. It seems to be something one must learn to live with!
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Lin516 - Name: Lin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/09/2013
- Age at diagnosis: 57
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