LDN (Low Dose Naltrexone) - Has anyone used it?

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cowgal
cowgal Member Posts: 833
edited June 2022 in Pain

I was wondering if anyone was using LDN (low dose naltrexone) to help deal with chronic pain? I heard about it on the stage 4 section and asked both my primary care doctor and my MO about it but neither knew anything about it.

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  • Irishlove
    Irishlove Member Posts: 82
    edited June 2022

    I use LDN for MS. I had chemo for MS and wanted a medicine that didn't carry side effects such as depression. I'm very satisfied with it after using it for 15 years. It's taken at bedtime and floods the body with endorphins that taps down inflammation. I found it also decreased the burning pain and deep bone pain. One or two words of caution. First is you can not utilize opioids in any fashion while on the drug. Two, you need to find the right dosage. Usually (at least with MS) the dosage starts at 3 mg and as needed, up it .5 mg at a time. I'm now on 4 mg. daily. Too high of a dosage can lead to restless leg syndrome. I did have vivid dreams at first and it did interfere with sleep. I switched to daily dosing but it was not as effective as it needs to work with your body's natural production of endorphin production, which occurs early morning hours. It is not an addictive medication, must be formulated by a compounding pharmacist.

    You may struggle to find a physician willing to prescribe the drug. Skip's Pharmacy in Florida has quite a bit of info on Low Dose Naltroxone that may help you.

    Laurel

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  • cowgal
    cowgal Member Posts: 833
    edited June 2022

    Thanks so much for the information irishlove! I am finding someone to prescribe it for me as neither my medical oncologist or my primary care physician is familiar with it.

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  • heady
    heady Member Posts: 1
    edited June 2022

    Is this being used for Post Mastectomy Pain Syndrome or Metastatic Breast Cancer

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  • cowgal
    cowgal Member Posts: 833
    edited June 2022

    I'm inquiring due to my side effects from treatment for metastatic breast cancer but it looks like it can be beneficial for a whole lot of things.

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  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited June 2022

    I tried LDN for chronic pain - was prescribed by my pain management MD. I started at 1.5 mg daily for 6 weeks, then 3 mg, 4.5 mg, ending with 6.0 mg, each at 6 week intervals. I found LDN totally ineffective for me. Each person is different in response to meds (something that is very noticeable on these boards!). Pain management docs are very familiar with LDN, so ask your oncologist for a referral. Good luck

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  • Catfurr
    Catfurr Member Posts: 69
    edited June 2022

    I’ve been onit since November and it’s probably the best drug I’ve ever taken. I started it for fibro pain and fatigue, starting slowly and building up to 4mg. When I was recently diagnosed with MBC, out of anger, I stopped taking everything. No BP, LDN, thyroid or supplements. Within a week, the joint pain and all the other pain that it had eliminated came back hard. I’m back on it now and it definitely makes a difference. You just have to find the correct dose for you. There is a good FB group for LDN!

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  • cowgal
    cowgal Member Posts: 833
    edited June 2022

    For those of you that used it, did your prescribing doctors already know about LDN or did you have to educate them on it?

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2022

    cowgal, I asked my psychiatrist this morning about LND for pain relief. Just briefly - yes, it is used for pain relief, in very low doses. Regular dose is 50+ milligrams while dose for pain management is from .5 to 3 or 4 milligrams. The pill is only manufactured in doses starting with 50 milligrams. The work around is to have a compounding pharmacy make the low dose form. Please feel free to to DM me.

    https://weillcornell.org/news/what-you-need-to-know-about-low-dose-naltrexone

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  • cowgal
    cowgal Member Posts: 833
    edited June 2022

    Thanks Cowgirl13. The problem is that my MO and my primary care provider are aware of what LDN stands for but don't have personal experience with it. My MO told me that he wanted me to have my primary care doctor prescribing for my pain. I did not actually talk to my primary care doctor about it but went through his nurse who when I asked about whether my doctor was familiar with it said that he really didn't know anything about it other than what it was but didn't ask if I wanted to try it. I understand doctor's not wanting to prescribe things that they don't have personal experience with or a drug company rep explaining it to them but this might be of help for me and maybe other patients. I am trying to figure a next step. I don't want to switch primary care doctors and there really isn't a lot of other doctors to pick from in my area. I may just need to write him a letter and explain my situation and include some literature for him from reputable sources and I guess see what happens. I didn't know if others had doctors who had to be informed about LDN before getting prescribed it or if their doctors already knew about it and were the ones who brought it up.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2022

    Cowgal, this article might be helpful for your primary care doc. Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization. One of the objectives "the article should ideally present a comprehensive summary of up-to-date knowledge on the usage of naltrexone or naloxone in low-range dosing, a first of this kind.

    Here's the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313374/

    Good luck!


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  • cowgal
    cowgal Member Posts: 833
    edited June 2022

    Thanks! I hope to get my documentation together, including your link over the weekend so that I can give it to my doctor on Monday. I do feel confident if I just drop it by with well written out letter explaining everything that the nurse will give it to my doctor and I think he will read it. He really is a good doctor and I think he would be open to something that could help patients if he feels more comfortable in his knowledge about it.

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