Nuerontin

poopergirl14052
poopergirl14052 Member Posts: 1,183 Member
in Ovarian Cancer #1
I am still having a heck of a time with nuropathy in my toes and feet. My MD said I could take nuerontin but I refused as I thought I could handle it but I am not so sure now. Does it really help and are there side effects? I just hate to take another pill, but I guess I will. Thanks for the input...val

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Have you tried
    Val,
    Have you tried vitamin B12, L-glutamine, alpha-lipoic acid, or melatonin? All of these are said to help with neuropathy, and they all have added benefits. I know my B12 is low despite the fact that I give myself an injection of the stuff every morning. I think it is a side effect of the chemo that I can't keep my levels up. L-glutamine will help heal your gut. I've also been working on repairing my gut from treatment. It can take years for it to heal from the insult of chemo. Alpha-lipoic acid, I've heard from my nurse practitioner, is one thing that some integrative oncologists say, every cancer survivor should be taking. And melatonin also works like Avastin, in that it is an anti-angiogenic. I don't know how desperate you are right now, but it would be interesting to see if any of these work for you, especially since they repair things rather than give you more negative side effects.
  • carolenk
    carolenk Member Posts: 907 Member
    #3
    Neurontin
    Dear Val

    I think there are other women taking Neurontin (gabapentin). According to Wikipedia, it works for about one third of the people taking it for neuropathic pain.

    Personally, I think it would be the LAST thing that I would take as I have seen some people with liver damage from it. I used alpha lipoic acid to treat/prevent neuropathy and had good results during and after chemo.

    Just want to mention that I have recommended alpha lipoic acid (ALA) for diabetics with peripheral neuropathy with good results. An additional benefit of ALA is that it will LOWER the HbgA1c--to me, this is proof of how it protects the hemaglobin from the toxic effects of hyperglycemia--and I think it protects nerves, too. ALA is considered to be a fat-soluble anti-oxident (needs to taken with meals for best absorption).

    You would need at least 100mg with each meal or twice that amount (depending on what you can afford). I would start off at 200mg with each meal for a month or until you saw results then drop the dose to 100mg with each meal to see if you can maintain at that level.

    I also take vitamin B12 shots which help prevent peripheral neuropathy but only if one has a pre-existing B12 deficiency.

    (((hugs)))

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #4
    carolenk said:

    Neurontin
    Dear Val

    I think there are other women taking Neurontin (gabapentin). According to Wikipedia, it works for about one third of the people taking it for neuropathic pain.

    Personally, I think it would be the LAST thing that I would take as I have seen some people with liver damage from it. I used alpha lipoic acid to treat/prevent neuropathy and had good results during and after chemo.

    Just want to mention that I have recommended alpha lipoic acid (ALA) for diabetics with peripheral neuropathy with good results. An additional benefit of ALA is that it will LOWER the HbgA1c--to me, this is proof of how it protects the hemaglobin from the toxic effects of hyperglycemia--and I think it protects nerves, too. ALA is considered to be a fat-soluble anti-oxident (needs to taken with meals for best absorption).

    You would need at least 100mg with each meal or twice that amount (depending on what you can afford). I would start off at 200mg with each meal for a month or until you saw results then drop the dose to 100mg with each meal to see if you can maintain at that level.

    I also take vitamin B12 shots which help prevent peripheral neuropathy but only if one has a pre-existing B12 deficiency.

    (((hugs)))

    Carolen

    Gabapentin and liver
    I wasn't going to bring this up, but since you did, my dog was on gabapentin for a few months. It really didn't help with her symptoms, so I took her to see a Chines medicine veterinarian. She said that a lot of the problems my dog was then experiencing were due to stresses on her liver by the gabapentin. We got her off of it, treated her with accupuncture and Chinese herbs, and now she is good as new.
  • mopar
    mopar Member Posts: 1,972 Member
    #5
    GOOD ADVICE
    Great advice from everyone here. Tethys covered what I would have suggested. Neurontin did not work for me - gave me horrible nightmares and other side affects. But the L-Glutamine, B6 and other methods worked much better. I took the L-Glutamine in powder form. You can get good quality relatively inexpensively through some trusted websites.

    My best to you, Val. Hope this all helps.

    (((HUGS)))
    Monika
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #6
    mopar said:

    GOOD ADVICE
    Great advice from everyone here. Tethys covered what I would have suggested. Neurontin did not work for me - gave me horrible nightmares and other side affects. But the L-Glutamine, B6 and other methods worked much better. I took the L-Glutamine in powder form. You can get good quality relatively inexpensively through some trusted websites.

    My best to you, Val. Hope this all helps.

    (((HUGS)))
    Monika

    L-glutamine
    is aggranaid the same thing. I use it for my patients and it is inpowder form that you mix with . Comes in cherry and orange. It has other stuff in it and is not just L-glutamine, Would like to start taking this if it helps. I do take vit 12 in pill form and calium-mag and vitD and mvi chewables. I knew tere was a reason I did't want Neurontin..my onc is very coventional. Thanks for your advice as it really helps..val
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #7
    poopergirl14052 said:

    L-glutamine
    is aggranaid the same thing. I use it for my patients and it is inpowder form that you mix with . Comes in cherry and orange. It has other stuff in it and is not just L-glutamine, Would like to start taking this if it helps. I do take vit 12 in pill form and calium-mag and vitD and mvi chewables. I knew tere was a reason I did't want Neurontin..my onc is very coventional. Thanks for your advice as it really helps..val

    I'm not familiar
    with the product you mention. The L-glutamine I buy comes in a plastic jar and is powdered. It isn't flavored.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #8
    I take gabapentine
    I have been on it before chemo 300mg a day with no side effects at all, it really helps me with the neoropathy. I'm a terrible speller sorry.
    Colleen
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #9
    Cafewoman53 said:

    I take gabapentine
    I have been on it before chemo 300mg a day with no side effects at all, it really helps me with the neoropathy. I'm a terrible speller sorry.
    Colleen

    I think we all are terrible
    I think we all are terrible spellers while on chemo I reread my post several time and still there are miss spelt words lol it is part of our treatments


    Anne
  • anicca
    anicca Member Posts: 334 Member
    #10
    mopar said:

    GOOD ADVICE
    Great advice from everyone here. Tethys covered what I would have suggested. Neurontin did not work for me - gave me horrible nightmares and other side affects. But the L-Glutamine, B6 and other methods worked much better. I took the L-Glutamine in powder form. You can get good quality relatively inexpensively through some trusted websites.

    My best to you, Val. Hope this all helps.

    (((HUGS)))
    Monika

    L-Glutamine powder?
    I've been having a difficult time with neuropathy in my feet. It was almost all gone, when I took 4 or 5 days of Cipro for a sinus infection, and that set me back to square one. I've ordered the ALA, but would like to know why the L-Glutamine is preferred in the powder form over the tablets? I would much rather take a tab. Also, if the powder is more effective, can you share a good, low fat, lo-cal recipe for how to take it? I've heard it tastes bad.

    DB
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #11
    anicca said:

    L-Glutamine powder?
    I've been having a difficult time with neuropathy in my feet. It was almost all gone, when I took 4 or 5 days of Cipro for a sinus infection, and that set me back to square one. I've ordered the ALA, but would like to know why the L-Glutamine is preferred in the powder form over the tablets? I would much rather take a tab. Also, if the powder is more effective, can you share a good, low fat, lo-cal recipe for how to take it? I've heard it tastes bad.

    DB

    Tablet vs powder
    Anicca: L-glutamine is cheaper in powdered form. And maybe powder is preferred because of the grams required to be effective?

    Hey, you got hair! : )

    (((hugs)))
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #12
    AnneBehymer said:

    I think we all are terrible
    I think we all are terrible spellers while on chemo I reread my post several time and still there are miss spelt words lol it is part of our treatments


    Anne

    Found some relief
    I asked mt Primary MD for somw Lidacaine cream and it helps a bit..especially at night. Takes away the twinges and electrical shock pains for a while.. I will take it...val
  • kayandok
    kayandok Member Posts: 1,202 Member
    #13
    I tried it,
    and it actually gave a boost of energy and masked the symptoms a bit. My feet felt lighter (as opposed to cement blocks) until it wore off. The downside is that it made me a bit dizzy and my pupils would not dialte. I had to stop after a couple months.

    My neuropathy is so bad that I feel like I have cement blocks for feet. I try not to think about it, since I cannot quite the chemo.

    kathleen
  • anicca
    anicca Member Posts: 334 Member
    #14
    LaundryQueen said:

    Tablet vs powder
    Anicca: L-glutamine is cheaper in powdered form. And maybe powder is preferred because of the grams required to be effective?

    Hey, you got hair! : )

    (((hugs)))

    Thank you, Laundry Queen! I
    Thank you, Laundry Queen! I do love having hair again, especially the eye lashes.
  • anicca
    anicca Member Posts: 334 Member
    #15
    kayandok said:

    I tried it,
    and it actually gave a boost of energy and masked the symptoms a bit. My feet felt lighter (as opposed to cement blocks) until it wore off. The downside is that it made me a bit dizzy and my pupils would not dialte. I had to stop after a couple months.

    My neuropathy is so bad that I feel like I have cement blocks for feet. I try not to think about it, since I cannot quite the chemo.

    kathleen

    Ouch! Your neuropathy is
    Ouch! Your neuropathy is much, much worse than mine. I really worry about it, because I teach ice skating for a living, and if I lose too much sensation, I'm done. Wearing skates all day can make one's feet completely numb and cold, like blocks of ice, and I already had some peripheral neuropathy from that, when I started chemo. Now, whenever I work, I have significant burning in my feet and even sometimes on my calf, for several days afterwards. I've also had cramping in my feet and toes, and my right big toe was pretty numb after last weekend. I'm just worried that I won't be able to keep working. I need the money, love what I do, and it's the only thing that keeps me half sane lately.
  • Songflower
    Songflower Member Posts: 608
    #16
    anicca said:

    Ouch! Your neuropathy is
    Ouch! Your neuropathy is much, much worse than mine. I really worry about it, because I teach ice skating for a living, and if I lose too much sensation, I'm done. Wearing skates all day can make one's feet completely numb and cold, like blocks of ice, and I already had some peripheral neuropathy from that, when I started chemo. Now, whenever I work, I have significant burning in my feet and even sometimes on my calf, for several days afterwards. I've also had cramping in my feet and toes, and my right big toe was pretty numb after last weekend. I'm just worried that I won't be able to keep working. I need the money, love what I do, and it's the only thing that keeps me half sane lately.

    Neuropatthy
    I take lyrica and it really helps my neuropathy. I take 300 mgm per day. I have very painful neuropathy; like my feet and fingers were smashed in a car door. My liver enzymes have been OK. It really helps me to function. I've tried the other things you have suggested and did not find they helped.

    Diane
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #17
    Songflower said:

    Neuropatthy
    I take lyrica and it really helps my neuropathy. I take 300 mgm per day. I have very painful neuropathy; like my feet and fingers were smashed in a car door. My liver enzymes have been OK. It really helps me to function. I've tried the other things you have suggested and did not find they helped.

    Diane

    Possible B12 deficiency
    Val: I just read in an intgrative medicine journal that Metformin (Glucophage) depletes vitamin B12. I seem to recall that you took that medicine. Anyway, maybe it's a good idea to have your serum B12 level checked even though you take B12 pills.

    You know that peripheral neuropathy can be from B12 deficiency. The CBC test isn't the best way to check for pernicious anemia since folic acid has been added to grain products. Anyway, I thought of you when I read that information.
  • Susan53
    Susan53 Member Posts: 178
    #18
    Nueratin
    I started on nueratin just 3 weeks ago. It really hasn't seemed to help me yet. How long should it take. I do know I had to work up to 3 capsules a day and the doctor said that I can't just quit them. I would have to be weened off of them. Sharon
  • cfont11
    cfont11 Member Posts: 115
    #19
    Susan53 said:

    Nueratin
    I started on nueratin just 3 weeks ago. It really hasn't seemed to help me yet. How long should it take. I do know I had to work up to 3 capsules a day and the doctor said that I can't just quit them. I would have to be weened off of them. Sharon

    Neurotin
    I take neurotin, 300 mg. three times a day along with a supplement, Alpha Lipoic Acid. It took a while for the neurotin to help me, over a month I would say. I don't have any side effects from it. It does make some people drowsy and it can cause indigestion if you don't take it with food. Overall, it has made the neuropathy in my feet much more bearable.

    Chris
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #20
    cfont11 said:

    Neurotin
    I take neurotin, 300 mg. three times a day along with a supplement, Alpha Lipoic Acid. It took a while for the neurotin to help me, over a month I would say. I don't have any side effects from it. It does make some people drowsy and it can cause indigestion if you don't take it with food. Overall, it has made the neuropathy in my feet much more bearable.

    Chris

    thank you for the good info
    I will try to follow your suggestions. I feel I am falling apart. I have a bad case of bronchitis and now my diabeties is way out of control. My doctor started me on Levamir insulin and I have to continue taking my metformin. I am having a hard time,,tired,,coughing and holding my abdomen so my hernias won't bust. I have no spleen so I guess this will go hand in hand. I got a juicer for Christmas si I will try like hell to boost my immune system and get better, My ca-125 remains stable at the moment..val

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