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Anyone tried LDN for PMR?

Posted , 15 users are following.

diane67131
diane67131

I've recently stumbled across some information on something called LDN (low dose naltrexone) which seems to be positive for the treatment of a whole host of autoimmune conditions, PMR possibly being one of them.  Naltrexone apparently is a medication used in opioid and alcohol addiction treatment but in high doses, 50mg or thereabouts whereas the dosage for autoimmune conditions is anywhere from 1.5 to 4mgs.  While not widely studied, there's success in the groups that have tried it and from medical research papers that I've read and postings from people that are taking it, it's very encouraging.  The side effects are minimal - vivid dreams when first taking it (better than osteoperosis, cataracts, etc.) and some people get nauseous if they drink alcohol (bummer) although many don't.  You can stop taking it abruptly with no adverse effects.  I've been off the prednisone for a month or so but still have some aches and stiffness and I really don't want to return to steroids.  I'm thinking about asking (coercing probably)  my rheumatolgist to let me try it if my discomfort continues.   I haven't seen anyone on this forum mention it.  Just curious if anyone has tried it.  Thanks, All.

3 likes, 39 replies

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  • audrey80537
    audrey80537 diane67131

    Posted

    I have been taking LDN for six months with good results. I went from 13 mg to 4.5 without a problem. Before LDN I could not drop below 13 mg without a flare. 
  • audrey80537
    audrey80537 diane67131

    Posted

    Hi Diane

    Before I found a doctor in my area (Central Florida) I ordered the LDN from a reputable  pharmacy in Israel.  I started at 1.5 and stayed on that dose for a couple weeks and then went to 3 mg. And finally 4.5.   

    Audrey

    • GeeJay42
      GeeJay42 audrey80537

      Posted

      Hi Audrey, yes I understand it has to be done at a compounding pharmacy. Fortunately we have a few in my area. I’m encouraged to hear it helps.
    • diane67131
      diane67131 audrey80537

      Posted

      Audrey,

      Did you need a prescription to order from that pharmacy in Israel?     I had looked into it a few months ago but wasn't sure if it was safe, and I thought you needed a prescription.   

  • Guest
    Guest diane67131

    Posted

    Hi. My best neighbor here in Denmark have got diagnosed with PMR. I myself have RA and use LDN for that. I found this thread because I wanted to learn if anyone have had succes with LDN for PMR. My GP prescribe ordinary 50 mg Naltrexone pills to me. I drop one pill in 50 ml of water, and after 3 hours and a little stirring, I can suck up the amount I need (4 ml/mg daily). The solution keep me going for 12 days. (In the fridge it will stay fresh for at least 30 days, and don't worry about the white filler – Naltrexone it self is 100 % water-soluble) With 28 pills in the package, I have enough for 336 days for approx 34 USD. No reps tell no doctors about ldn here either, but my GP happens to trust me. No need to pay extra for small dose naltrexone pills.

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