neuropathy help

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  • Boo46
    Boo46 Member Posts: 539
    edited March 2008

    Does anyone know any alternative therapies that help with neuropathy? I am over a year out of treatment and am still dealing with the foot pain. I tried and could not tolerate gabapentin and other drugs in that class. I developed headaches, dizzy spells, confusion. All pretty scary. The side effects are gone now since I stopped the drugs but oh do my feet hurt again!

    Thanks for any ideas.

    Sue

  • RIV54
    RIV54 Member Posts: 359
    edited April 2008

    Sue, I'm not sure this will help you, but my onc put me on 100mg of B6 once a day, but he did say that it would be a very long time before it would get better. Good luck.

  • mittmott
    mittmott Member Posts: 409
    edited April 2008

    I have this problem with my arm.  Doc started me on cymbalta.  It's supposed to help with neuropathy.  Can't tell you more, I just started today.By the way, it was a neurologist I went to today. 

  • Harley44
    Harley44 Member Posts: 5,446
    edited April 2008

    I took L-glutamine during my tx, to prevent neuropathy... I don't know if it will help you after you already have it, though...

    Best wishes,

    Harley

  • BlindedByScience
    BlindedByScience Member Posts: 314
    edited April 2008

    Sue, Constantine Kaniklidis, AKA Edge, posted a very detailed summary of his recommendations for neuropathy on another website. I have his text below. You can find this, and other posts from him, here (link is actually specific to the post below):

    http://www.websitetoolbox.com 

    There are many potentially effective interventions for protection from, and releif of, peripheral neuropathy and associated neuropathic pain, so I'll briefly review these below.

    Evidence-Based Interventions for Relief from Peripheral Neuropathy

    Anticonvulsants


    Besides gabapentin (Neurontin), titrated to 3,600 mg over 8 weeks, and pregabalin (Lyrica), 300 - 600 mg total daily (in 2 or 3 divided doses) other anticonvulsants have been found of benefit in peripheral neuropathy (PN), such as oxcarbazepine (Trileptal), at 1,200 and 1,800 mg/day, sodium valproate (Depakote) at 1000 - 1200 mg daily (in 2 to 3 divided doses), and lamotrigine (Lamictal) at 25 mg / twice daily.

    Note: I am not unduly regretful that your insurance failed to cover a course of Lyrica, and I should note here that I am not much of a fan of pregabalin (Lyrica) over gabapentin, although many clinicians are. Although Lyrica is relatively well tolerated and causes somewhat less sedation than gabapentin, it's associated with many more rare but serious adverse events, including rhabodmyolysis (a potentially fatal muscle disease), acute renal failure, central nervous system effects, hyperthermia, and secondary acute-angle glaucoma. Indeed, all patients on Lyrica therapy must be monitored closely for myopathy and ocular complaints, and in addition Lyrica is also significantly associated with peripheral edema and weight gain, and must be avoided in patients with hypertension or congestive heart failure. My guidance is it should be deployed only under a strict supervision / monitoring program, and if this cannot be assured, other agents should be tried.

    Antidepressants


    Antidepressants, both tricyclics, and those of the new SNRI (serotonin norepinephrine reuptake inhibitors) have been found of benefit, with amitriptyline (Elavil) dosed at 100 - 150 mg / daily (150 mg at bedtime, or 75 mg / twice daily) being one of the earliest. The SNRI antidepressant duloxetine (Cymbalta), 60 mg once daily, duloxetine 60 mg twice daily, and duloxetine 120 mg once daily, were effective and safe in providing neuropathic pain relief, with benefit appearing within the first 7 days of treatment, and there were few significant differences in either efficacy or tolerability across all these doses and schedules (duloxetine (Cymbalta) is FDA approved for the related condition of peripheral diabetic neuropathy).

    Analgesics


    The CAPSS-237 Study Group found that tramadol-APAP (acetaminophen), 37.5 mg tramadol/325 mg APAP on a schedule of 1 -2 tablets four times daily), was effective and well tolerated in providing relief from neuropathic pain,; tramadol is a low-abuse potential analgesic which acts centrally to block pain perception.

    Topical Agents


    Of the topical interventions, besides capsaicin (as 0.05% ointment or gel), which must be applied 4 times daily to each affected area to be effective, 5% lidocaine has been found modestly effective. In addition, there is some preliminary evidence (and I am myself aggregating an as yet unpublished case control series of currently 36 subjects) that Traumeel topical gel is of appreciable benefit, and it's efficacy can be further enhanced by occlusive dressing (application on area, which is then wrapped in a cling type plastic wrap (like Saran wrap)), at least 4 times daily or if logistically not viable, single application overnight. Occlusive application leads to significantly enhanced dermal concentrations and hence higher efficacy.

    CAM

    (Complimentary and Alternative Medicine) Interventions
    Besides ALC, Vitamin E (600 mg / daily in two divided doses) has been found in several studies to effectively and safely protect patients with cancer from the occurrence of taxane-induced and platinum-induced neuropathy.


    Caution: the trial used 300 milligrams (mg) of Vitamin E twice daily; this would be approximately equivalent to 450 IUs (international units) twice daily, for a total of 900 IUs.

    Alpha-lipoic acid (ALA) was tested for potential neuropathy protection in several trials that found that oral ALA for 5 weeks improved neuropathic symptoms and deficits, and that 600 mg once daily appears to provide the optimum risk-to-benefit ratio. It should be noted that three doses were tested in the trial, ALA-600, ALA-1200, and ALA-1800, and although there were no statistically significant differences in benefit, TTR (time to response) was different, with ALA-600 and ALA- 1200 showing significant improvement after 2 weeks, while improvement was noted as soon as after 1 week on ALA-1800.

    Note: the most robust trial used a sustained release (SR) formulation of ALA (a pharmaceutical-grade SR formulation is marketed by Jarrow, and available from Vitacost.com and iHerb.com).

    A similar CAM agent, glutamine is of benefit, but my sense from the research and field experience is that significant relief requires large dosing at 30 grams / daily total, scheduled at either 2 (15 g) or 3 (10 g) divided doses. More practical is a trial of N-acetylcysteine, NAC, at 1,200 mg.

    Finally two non-pharmaceutical interventions are of potential benefit: PILT (pulsed infrared light therapy), also called anodyne therapy treatments, given for 30 - 40 minutes three times a week over an eight-week period, and acupuncture.


    Final Reflections and Guidance


    Gabapentin has a good reputation of benefit but make sure to titrate up to the effective upper range gradually, at no more than 1200 mg every 3 to four days.

    One strategy is to combine this with CAM intervention, at the very least Vitamin E at 900 - 1000 mg daily, along with a course of alpha-lipoic acid (ALA) 600 mg (300 mg of a sustained release (SR) formulation, twice daily); an alternative to ALA-600 SR is trial of NAC (N-acetylcysteine) at 1,200 mg / daily (once or in divided dose), but there is somewhat more robust and compelling evidence for the benefit of ALA-600 SR.

    An alternative to gabapentin, or an option after trying gabapentin is the SNRI antidepressant duloxetine (Cymbalta), and I would advise beginning with 60 mg once daily, and escalate to twice daily if more relief is required after one week. Gabapentin and Cymbalta have not been evaluated head-to-head, but my sense from research review and field experience is that they are well matched in both efficacy and tolerability, with considerable individual variation in response, so switching over is viable. From some unpublished findings, and from the FDA approval in peripheral diabetic neuropathy, I would probably have a modest favor of Cymbalta over gabapentin.

    Any of these should be combined with topical intervention, and if capsaicin 0.05% 4 times daily is inadequate or not tolerated, occlusive application of Traumeel gel may be tried, especially overnight, while regular application of the gel can be deployed 4 times during the day, as the gel is invisible and non-staining. Tramadol-APAP (acetaminophen), 37.5 mg tramadol/325 mg APAP on a schedule of 1 -2 tablets four times daily, can be added if additional analgesia is required.

    Below is an aggressive, fast-track anti-neuropathy program for rapid and optimal relief (expense is of course to be weighed in given the typically not-low prices of CAM interventions).

    * Gabapentin (Neurontin)
    [see above] OR duloxetine (Cymbalta) 60mg once - twice daily
    +
    Vitamin E at 900 - 1000 mg daily
    +
    Alpha-lipoic acid (ALA) 600 mg SR (sustained release)
    +
    Traumeel (topical) gel): occlusive application nightly, 4X gel application daily
    * Optionally to be added from increase analgesia:
    Tramadol-APAP 1 -2 tablets four times daily

    Constantine Kaniklidis
    Breast Cancer Watch
    edge@evidencewatch.com

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited April 2008

    None of the drugs helped me.  I do take Lyrica now for restless legs a by product of neuropathy in the legs. (Does help some with pain in legs but not my hands?)  I'm almost a year from last chemo and still have server hands and feet.  The only thing that helped me was acupuncture and my message therapist used a electric probe on my hands and feet and this seem to help the most.  While I was out at MD Anderson in Houston they were doing research and said they really did not have any true way to treat this??? 

    Living in Hope,

    Flalady

  • Linda1
    Linda1 Member Posts: 202
    edited April 2008

    Sue, I've taken ginkgo biloba for several years to help avoid diabetic neuropathy.  I started it on my own, but the endocrinologist I saw later agreed that it was a good idea since he's seen it help many who are dealing with diabetic neuropathy.  I continued to take it right through chemo and had no neuropathy at all.  From what I read it increases the blood flow to the extremities.  My ophthamologist thinks it may be one reason the diabetes hasn't damaged my eyes either.  I do have to stop taking it a couple of weeks before any surgery to reduce the risk of excessive bleeding.  I haven't had any negative side effects from it in the years I've been taking it and it doesn't negatively interact with any of the numerous prescription meds I take.  If you're going to give it a try, keep in mind that it takes a little while for the full effect, so give it at least a couple of weeks.

    Hope you find a remedy!

    Linda  

  • anondenet
    anondenet Member Posts: 715
    edited April 2008

    Alpha Lipoic Acid 400-1600 mg.

  • Boo46
    Boo46 Member Posts: 539
    edited April 2008

    Thank you all for you input and info about your own experiences. I have also tried the B6 and vit E with no effect. I will try some of the CAM suggested. I'll let you know if I obtain reliefSmile

    Thanks again,

    Sue

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