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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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  • Kessy_X4
    Kessy_X4 diane67131

    Posted

    I am just about to try 2.5mg for suspected polymyalgia
    • Anhaga
      Anhaga Kessy_X4

      Posted

      Is that a typo - starting at 2.5?  2.5 mg is unlikely to help.  On the other hand 25 mg is a bit high.  Usual starting dose is 15, sometimes 20.
    • diane67131
      diane67131 Kessy_X4

      Posted

      Kessy, this is an old thread that I started some time ago, asking about LDN.   When you say you're about to try 2.5mg, is that Prednisone or LDN?  Anhaga is correct, if it's Prednisone, it probably won't make a difference.   I was diagnosed with PMR five years ago and started on 20mgs.  I had the usual side effects.  I was able to wean off of it, with much difficulty, probably six or seven months ago but still had some discomfort but I have osteoperosis now so wanted to stop the steroids.  I was able to find a doctor who would prescribe LDN.  (my rheumatologist wouldn't)  LDN has worked very well for me.  There are no side effects and I don't have the fatigue I used to have.  When I read on this forum all the people suffering and having trouble with steroids, it makes me sad.  I hopefully will never have to go back to taking prednisone.  Currently, i take 4.5mgs of LDN.  It has really given me my life back.

    • linda17563
      linda17563 diane67131

      Posted

      Interesting....are you saying your GP (in UK) prescribed LDN? will you always have to take it, or are your blood tests the marker...I am really suffering on pred and going round in circles and I take it you have far less side affects?.....Would love my life back!
    • diane67131
      diane67131 linda17563

      Posted

      I'm in the U.S.   My rheumatologist actually released me at 2mgs of Pred. if you can believe it, told me to just continue to wean off it.  She said I didn't have to come back to see her.  When I did wean off it, I was still achey.  I had read a lot about LDN so I called her to see if I could try it.  She hadn't heard of it and told me to "stay off the internet."   Undetered, I found a doctor here in my state via an website that connects people to doctors who prescribe  LDN.  He prescribes it for cancer patients as well.  I don't expect to be on it for the rest of my life.  I've had pmr for five years now and am hoping that it will burn itself out soon.  The only side effect is vivid dreaming in the beginning.  As compared to the 80 or so side effects of Prednisone, I'll take the dreaming.  

    • EileenH
      EileenH linda17563

      Posted

      To my knowledge there is only one doctor in the UK who uses it - a private GP, not on the NHS and she is in mid-Wales. I don't know anyone in the UK who uses it but there is one person in Norway whose GP put her on it. I don't know how she gets on with it.

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      My GP asked me if I'd heard of it and if I was interested in giving a go! Talk about different worlds!

  • audrey80537
    audrey80537 diane67131

    Posted

    Hi Diane,

    im wondering if you ever went on to try LDN AND IF SO WHAT WERE YOUR results?  

    I have been on it for one month now and do notice a significant difference. 

    If you can't get a prescription you can get without it from a reputable pharmacy in Israel.

    • diane67131
      diane67131 audrey80537

      Posted

      Hi, Audrey 

      ive been taking ldn for about a year now.  It did help, not only with pain but fatigue.   Before I took it, I would get so drowsy in the afternoon that I would have to pull off the road on my way home from work and find a place to park so I could close my eyes.   I'd fall dead alseep within minutes.   After starting ldn, that no longer happened.   Overall, it has made an improvement in my life.   

    • audrey80537
      audrey80537 diane67131

      Posted

      It's really sad that more PMR patients are not made aware of it as it could change their lives.  I only wish I had known about it two years ago.  

      LDN can be gotten without a prescription from a pharmacy in Israel.  The cost isn't all that different from a prescription here in the US.   At first I ordered it from Israel  until I found an MD who practices holistic medicine.  The customer service in Israel is fantastic but it takes about 14 days.  

      The reason there are not big trials is because the drug has been around since the mid 80's in a larger dose for other problems and there is no money for these trials because the pharmaceutical companies cannot make money on it.  Stands to reason they would not spend millions for a trial for no return. Since doctors learn about medications from the pharmaceutical companies it's also understandable most doctors know nothing about it and when it is brought to their attention by a patient it doesn't go over too well.

    • diane67131
      diane67131 audrey80537

      Posted

      That was my experience.   My doctor had never heard of it and was not the least bit open to me trying it.    
  • GeeJay42
    GeeJay42 diane67131

    Posted

    I was just diagnosed with pmr a couple of months ago. My pcp gave me 14 days of 20mg prednisone and set me up after that with a rheumatologist. I told him I wanted off the stuff and started stepping down. I am at 2.5 mg a day now and off next week. I am mostly in pain and stiff first thing in the morning but I take a suppliment called Boswellia that contains frankinsence oil and has helped a lot. I asked my rheumatologist about Ldn and he had heard of it but said there wasn’t indication it would help pmr. Glad I found this site because I know a nurse practice really who is licensed to prescribe and is also into holistic treatments. I plan to try it. My pain is mostly upper body shoulders, arms, wrists and fingers and across back of neck.
    • diane67131
      diane67131 GeeJay42

      Posted

      Geejay,

      ive been taking LDN for a couple of years at least and doing well with it.   However, with that said, I took prednisone for five years and had tapered off it slowly before I started ldn. To go from 20mg to 2.5 in two months is too fast just based on my own experience with PMR and everything I've read in this forum and elsewhere.  I felt it was worth a try and stayed under a doctor's care.  Good luck!

    • GeeJay42
      GeeJay42 diane67131

      Posted

      Hi Diane, I was only on the pred 14 days when I started titration down. I am taking my supplements an stiffness is worse than pain at this point. I go for acupuncture tomorrow and depending on how that goes I will contact my friend and get set up with LDN. I am adamant about not taking prednisone and especially since reading up on it and three people who developed a fib after they had been on pred a while. I am 75 years old and what I don’t need is another complication from a drug. Thank you for your reply. God bless you!
    • diane67131
      diane67131 GeeJay42

      Posted

      I get relief from acupuncture.   It took me a while to find a good one.  She prescribes an herbal supplement which seems to help.   I'm with you on the drugs.   I have osteoporosis now.   Unfortunately, the only doctor I could find that prescribes ldn around here charges me 250 for an office visit.  🙁   

    • GeeJay42
      GeeJay42 diane67131

      Posted

      I spoke with my friend tonight who works for the practioner I will see for the LDN. She told me some insurances will cover it so I will have to pay for the office visit though. Stay well, I’ll say a prayer for you. 🙇???

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