L-Carnitine for Chemo induced Neuropathy

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CaliKelly
CaliKelly Member Posts: 474
edited January 2019 in Managing Side Effects of Breast Cancer and Its Treatment

I'm wondering if anyone has tried L-Carnitine for CIPN? I've read pro and con, some articles say 1000 mg per day helps with the pain and burning in hands and feet. Some other articles say it makes it worse. I intend to try it, as I've tried so many other things, with limited success. Currently taking Gabapentin and Cymbalta. Helps somewhat, at least it's much worse when I stop these drugs. I've tried many topical things, so far not much helps. This aggravating condition is still around 3 years post TAC chemo, and 1 1/2 years post Xeloda chemo. Any suggestions, greatly appreciated!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2019

    I took Acetyl L-Carnitine during chemo, along with Vit B6 and L-Glutamine, to prevent CIPN. My understanding is that Acetyl L-Carnitine is more readily absorbed than L-Carnitine and crosses the blood brain barrier more easily. I believe that you can dose up to two 1500mg daily, but I stayed at one - maybe start there? Some MO will approve this for CIPN prevention during chemo, but there was a study that came out not long after I did chemo that showed a detrimental effect. They were using mega doses in this study, but still some MO stopped letting their patients use it simultaneously. Since you are post-chemo I don't think it would hurt to try - it is a natural body-produced substance rather than Rx meds. Good luck!

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  • CaliKelly
    CaliKelly Member Posts: 474
    edited January 2019

    Thanks, Special K , I read those conflicting studies. But it's my MO who suggested it. I'm going to get it today, start with1000mg . I'm presuming it helped you to avoid the neuropathy? Did you use 1000 twice a day? I'm desperate for relief! Already on the B vit. Also will get glutamine, since I've read about that too. Yes, acetyl l carnitine, that's what my MO said. Thanks!💗

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    I did B6 daily, 100 mg, and 750 mg of L Glutamine on the day before, the day of, and the day after chemo to prevent neuropathy... it worked very well for me.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2019

    I had mild neuropathy starting with the first infusion - fingers, feet and tongue (weird!), and it resolved prior to the next infusion for the first three. For the fourth, fifth, and sixth, it didn't resolve but didn't really get more intense either. Post-chemo I lost the tongue and fingertip issue pretty fast, bottoms of my feet stayed numb for about 90 days, gradually improving, and then they were fine. I have had no problems since, no late onset CIPN. I have no way of knowing if taking those supps kept me from experiencing a worse case of CIPN, or if they made no difference, but I am glad I took them. I took 1500mg once a day for the Acetyl L-Carnitine, a regular 100mg capsule of B6, and 30g of L-Glutamine powder in three 10g doses daily, dissolved in a cold, non-acidic drink. I have taken NOW and Doctor's Best brands of the Acetyl L-Carnitine and it seems to come in 500mg, so you could take two at once, or take one with each meal?

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  • CaliKelly
    CaliKelly Member Posts: 474
    edited January 2019

    Thanks so much ladies! I'm getting the supplements as soon as I leave the gym, my feet are seriously burning up😜 Cramping my style, literally😂

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