Anybody try LDN?

[SandyBoots]

I was wondering if anyone has tried low dose naltrexone (LDN) for their PMR? My Functional Medicine GP has said that she has successfully treated many of her patients with a variety of conditions using this medication at very low doses. I am sure my Rheumatologist would not agree to prescribing since it is off label and not approved by the FDA for PMR at this time, but from what I have read it seems safe. I am skeptical and curious. thoughts?

ldnresearchtrust.org/condit...

[SnazzyD]

Hello, here is link from related posts when it was discussed. Not sure it came up as particularly positive.

healthunlocked.com/pmrgcauk...

[piglette]

I have seen people asking about LDN all the time I have been a member of this board. No one seems to rave about any fantastic results though.

[jinasc]

I do know people who have tried it and it did not work. Neither did it do any harm.

You might like to read up on it

pubmed.ncbi.nlm.nih.gov/308...

[PMRpro Ambassador]

As the others have said - it's a question that comes up regularly. No-one so far has had any long term success with it. I believe it is used in Norway and one lady said her GP was starting her on it - she never came back to tell us it was wonderful! Nor have any others, even if initially it appeared to be doning something.

It is probably harmless enough but a bit of a pain to get hold of most places.

[SandyBoots in reply to PMRpro]

Thanks all for your replies. If I decide to give it a go, I will certainly report back in. I am just off prednisone and my pain is rather minimal, although I am still a bit stiff and my neck and shoulders are a little achey. It is so hard sometimes to know what is my PMR or my Osteoarthritis talking to me! I know I have arthritis in my neck and have for many years.

Not sure LDN is worth the reported insomnia that is sometimes associated with its use.

[PMRpro Ambassador in reply to SandyBoots]

Some degree of stiffness after stopping pred is quite common - it usually settles after a time.

[Koalajane]

I don’t know if it is possible to get LDN in the UK

[PMRpro Ambassador in reply to Koalajane]

It is as far as I know - but there are only a couple of chemists that do it, one in Glasgow I think. It is only available privately - unless you have a drug habit.

[Hidden]

I am 4 weeks on it. No pred. No painkillers and no other meds.Painlevel down from 7-8 to 3-4.

It gives me a Hugh mood uplift. Feel like the Duracell bunny commercial and enjoy life again. Went from 1.5 mg to 3 mg. Will lift it up further to 4.5 mg in a few weeks. Optimal result takes 2 to 3 months. No serious side effects. Not addictive and can be stopped any moment.

[SandyBoots in reply to Hidden]

Well, that's encouraging. Do keep us posted along your journey. My functional GP wants to talk to me about it again in a month. I am considering it.

[colmarin]

I just had a friend suggest Low Dose Naltrexone to me. She takes it for Interstitial cystitis. Of course this is not related to PMR but she said it is the only thing that she's used that manages the pain. So I was very interested in coming back to this site and seeing if anyone had experience taking it. Was hoping it might be the magic pill for us but it doesn't seem to be the case. However it is encouraging to see the response that GertG is having. Please do keep us posted.

[Julie_R]

In 2015, I thought I had PMR. Maybe I did. But within six months, it became polymyalgic-onset severe systemic rheumatoid disease, based on sx and anti-CCP testing. And it basically tried to kill me.

Younger et al (see jinasc link above & navigate) inspired me to try LDN. It apparently works best when there is more inflammation. The journal article recommends it be tested on PMR and rheumatoid arthritis, especially if sed rate is high. Once dx'ed with the RD, I tried LDN, with no other drugs than a few more months of aspirin (which wrecked my digestive system, so had to stop...) LDN 2.5 mg alone progressively put me in 95% remission; see my posts in NRAS.

Remission held for 5 years; LDN may have also helped my MS/fibro. Then COVID... I may have had a mild early (Feb 2020) case. In late summer, some breakthrough of PMR/RD-type sx. I knew a(nother) case, especially if it kicked up my cytokines, could break the LDN success, so, with some trepidation, I got the Pfizer vaccine on 10 March. 1st shot kicked up my autoimmune conditions' sx, including some of the PMR-phase ones. We are waiting for the flare to dissipate a bit, then consider the 2nd shot. In the meantime, I continue LDN at same dose. I do believe it continues to help, as I am slowly improving, just as I did when I first took it.

During the PMR phase, my sed rate was in the 80's(+). It dropped to 3 with LDN. With COVID (vaccine), my sed rate shot up into the 20's, now back to the teens...more evidence LDN is helping...just need patience. I feel incredibly lucky as I can't take prednisone.

The key for LDN is finding your optimal dose through slow titration. I started at 0.5 mg and increased 0.5 mg every two weeks. More isn't always better. We tested 3 mg on me twice, then settled on 2.5 as best. Some people's Goldilocks dose is 0.5 mg every other day. The insomnia that is a known LDN side effect should resolve within a few days of increasing dose. If it doesn't, drop back to previous lower dose. I lucked out that 2.5 mg also appears to be the most effective dose for my RD. I still have some insomnia, but it is related to my medical conditions and similar to what I had for decades before LDN.

We also kept track of other metrics...CRP, platelets, WBC's, bone density, Vectra, etc, so in case the LDN effect was only subtle, we would have some numeric values to indicate if the LDN was enough. I would advise the same for anyone trying LDN. (I actually advise that all people keep copies of their medical tests...but I realize most folks aren't biologists like me and would rather leave that to their docs...and that's another issue anyhow.)

Any of you who try LDN for PMR, I would be curious of your logistical details, medical tests, and outcome, successful or not...

Thanks

[Julie_R in reply to Julie_R]

Quick update: After I wrote this post, I began to have more RD sx, especially inflammation in my hands/elbows/shoulders/neck, and insomnia, similar to when I tried to increase to 3 mg LDN 2 separate times when we were titrating. I began to suspect that the COVID vaccine, either the mRNA or the adjuvant, had re-set my immune system to a higher state of sensitivity. So, in consultation with my pharmacist and naturopathic doctor, I dropped the LDN from 2.5 to 2 mg almost 3 weeks ago. Subtle change at first but now can say definitely better. I will watch for another couple weeks, and probably get more blood tests, to confirm. I do know that sometimes the appropriate LDN dose can change, as our bodies change.

Yes, PMR Pro, we don't think I have PMR (anymore.) But much of the biology is the same. My experience with LDN has been very positive, especially its ability to drop my inflammatory markers long-term.

LDN also raised my mood level, although as with any effect on one's mental status, that can change one's life and personality in ways one doesn't expect--in my case, raising my optimism that I could make change by standing up to BS at work. I guess the smiley face got a little too smiley... Now at 2 mg, I'm more realistic and make better choices. I also feel sad and angry more, but frankly, with all that is happening, maybe that is more realistic, too.

After 5 years on this drug, I've started to think I would like to wean off. It is the only Rx drug I take for RD/MS/fibro But every time I miss a dose, I hurt more. And I am concerned that if I get COVID (again) that I would be a goner due to cytokine storm, sooner or later. So being able to drop the dose is a good compromise.

As I have repeatedly stated (see NRAS), proper titration is the key.

Julie_R