Low dose Naltrexone

[RCCO]

Hello, my question concerns low dose Naltrexone. Those that are on low dose Naltrexone, would you please share how fast it worked and how you titrated to the dose you are on? Any side effects noted? Anyone able to use this and eventually stop when the PMR went into remission? Thank you

[PMRpro Ambassador]

You are very optimistic! I have not yet met anyone who tried LDN who found it successful.

[jinasc in reply to PMRpro]

Me too and you met one of them.......................

BTW It is still not licensed for use in UK for PMR and/or GCA. It is for other illnesses. However some Consultants or GP's will prescribe it.

[powerwalk]

My new rheumy gave me a prescription for it, I tried it but didnt keep on it for long as my stomach was bad on it, i may have continued with it for a while if my hip pain hadnt been so bad and i really needed to take some solpadeine or something to help with the pain. You cannot take anything with codeine when taking LDN. I generally felt rotten on it, but dont know if that was just coincidence but my mood was particularly low. It seems to be a bit hit and miss generally. May suit some not others. I may try it in the future but not at the moment. I think it also takes a while to show any improvement. I was taking it mainly for the fibromyalgia pain though i have seen it is also now being used for autoimmine issues. Do let us know how you get on with it if you decide to use it.

[RCCO in reply to powerwalk]

I will, thanks

[Blearyeyed]

Although it's shown success with some other conditions I've not seen anyone on this forum since I've been a member whom had success with it for PMR / GCA , and Pro would know if there was.

In fact , I was on Naltrexone for other joint pain which was increased and it didn't touch my symptoms. It was only steroids that brought them under control.

[HeronNS]

Beside this post you've made there are links to related posts, a couple of which mention LDN. This can get you started looking through previous posts on the subject.

[Altpmr]

I have been on 4.5mg naltrexone since March 2018. I am also currently tapering Prednisolone ( currently at 9.5mg ). I cannot definitively say that the LDN is helping since I started LDN and Pred at the same time and have not tapered nor stopped the LDN. It doesn't seem to cause any problems.

[daworm]

I’ve thought about it...with this PMR I’ve investigated almost any thing I can think of...it all comes back to what really works and that only seems to be pred....

[Julie_R]

If there is any chance that you may actually have rheumatoid arthritis, LDN may be an option for you. I don't know if it would work solely on PMR; however my experience might be instructive if you are attempting to use it.

I had mild undifferentiated connective tissue disease for decades before I got slammed with what appeared to be PMR. I did not take (and never took) prednisone or any other Rx drug; actually, the rheumatologist I consulted refused a second consultation because of my decision. (Instead, I took high-dose aspirin for a couple months, then into low-dose due to protective effects against GCA.) After about ~8 months of erratic increase and morphing of my symptoms beyond PMR (lungs, vascular system, etc), as well as an increase of my anti-CCP antibodies, we realized that I had transitioned(?) into severe systemic rheumatoid disease. (My rheumatoid factor has always been, and has stayed, within normal range.)

I found a naturopathic doctor who titrated me up to optimal dose slowly. Within a couple months, I knew it would work; within six months, I was in 95% remission. I have now been at that dose (2.5 mg) for 4+ years. Because rheumatoid disease is life-long, and because accidentally missing a dose brings on rheumatoid sx, and because I have no nasty side effects from the LDN, it is unlikely I will get off the LDN completely. I may be able to take less at some point.

The important things I would try and test:

Monitoring: blood tests! Watch sed rate and CRP especially. I also use the Vectra test. Several other markers can go haywire. Also, keep detailed records of your symptoms vs LDN dose or any other drugs you are taking.

Titration: Start as low and go as slow as necessary for you individually. If you have "side effects," or the benefit decreases with increased LDN, your dose may be too high.

Self-care: LDN won't work if you abuse your body or otherwise don't give the LDN a chance to re-set your immune system appropriately. I also supplement with micro doses of undenatured collagen so my body will recognize it and not be so prone to attack it.

Jarred Younger et al suggested clinical trials with LDN for PMR when they noticed that those folks with higher sed rates in trials for other diseases (MS, fibro, etc) had better results with LDN. This is why I did a trial on myself. I also have had MS and fibro for 35+ years. LDN hasn't exacerbated them, and may have helped them a bit. But I've never taken Rx drugs for them either.

I realize I am not a typical case, and your results almost certainly will be different. The point is that we are still experimenting; that's why it is call practicing medicine.

I don't want to note all my personal results, titration, (temporary) side effects, and other details here. If you think my experience may be applicable to your case, see my posts in NRAS. Please let me know what happens!

[RCCO in reply to Julie_R]

Hi Julie. Thanks for answering my post. I actually never went on the LDN and weaned off the prednisone in 3 months. That was 6 weeks ago. I used ibuprofen to give me some relief so I could work. It helped some but of course not like prednisone. However over the past 6 weeks I have had my symptoms start to go away and now I have only 5% of my original pain. I’m not needing any ibuprofen and 3 weeks ago my inflammatory markers have reduced by 50%. Will repeat them next week. I believe it is going away now. It has only been 5 months since my diagnosis. I feel quite blessed, I know there are many out there suffering.

[Julie_R in reply to RCCO]

Oh, fantastic! You are either lucky, determined, or super-good at anti-inflammatory self-care. Maybe all three!

Just curious, did you ever get an anti-CCP or rheumatoid factor test? And how old are you? I had several episodes over those preceding decades of what I thought could have been PMR previous to the 2015 massive attack. (We just called it "undifferentiated connective tissue disease.") I had been taking glucosamine sulfate, and went off it or decreased the dose, and that's when two of the episodes happened. I went back on it, 1500 mg, and improved 95%. The massive attack occurred when I was 59, which is standard age for late/polymyalgic-onset rheumatoid disease. Don't mean to scare you, just giving you a potential heads-up.

We also are quite interested in the interaction between anti-CCP levels and PMR, because they can co-occur. And how high a person's anti-CCP can go during PMR before the risk of transition to RD rises to almost-certain levels.

Thanks.

[RCCO in reply to Julie_R]

Well, I am 49 and a female. Normal RF and Anti CCP, elevated CRO and ESR. Have none of the RA features as far as location, had acute onset, great response to low dose prednisone. My rheumatologist is convinced I have a PMR like inflammatory arthidity but finds it difficult to call it PMR because of my age. Seronegative RA is more likely but I am having such a limited course that I do not believe it is RA. It is a point of contention with him and I. I am a physician also and he has been gracious to let me take my own course. He wanted me off steroids so he could examine me when I was symptomatic since I was started on steroids before seeing him. My exam was classic PMR, full and painless passive range of motion of my shoulders but severe pain with resistance. As you know, RA effects the joints and should hurt with even passive movement. We even got an MRI to prove it was PMR and the findings showed inflammation of the musculotendinous junction with no joint involvement. Regardless he still feels whatever I have is exactly like PMR but he hesitates to call it such.

[Julie_R in reply to RCCO]

Actually, my RD has hit my tendons harder than my joints. I didn't have full passive range of motion of my arms, but I did have far more than lifting them myself. The pain and resistance would start at 45 degrees to the side, classic tendinitis, when raising my arms; I could go higher to the front. My hips improved during the 8 months; my neck/shoulders got worse. I had hardly any damage to, or even pain in, my hands or feet. However, my Raynaud's did get a lot worse in both appendages. I did get significant swelling around the AC & SC joints, and where my ribs meet the sternum & spinal column. As noted above, it hit my lungs and vascular system, too. Over the three years before dx, it ravaged my bone density, even compared to the three years after menopause.

My anti-CCP was low/normal when I was first tested six years previous by a very prescient FNP. During the previous "episodes," I did have the sx you describe. I didn't take prednisone because I saw what it did to my mother. She had many of the sx that I eventually got, but was never dx'ed.

I have issues with improper conversion of vitamin D from 25-OHD to 1,25 OHD. Since you are a physician, you know that vitamin D is a steroidal hormone that affects not just bone density, but the immune system and many other physiological processes. The apparent over-conversion is worst during flare of any of my autoimmune conditions. I therefore just got back from a long walk in the sunshine, and am having wild-caught Alaskan salmon for dinner! (i.e. no supplements)

All above (plus more) is why we believe that I have systemic rheumatoid disease, not just rheumatoid arthritis. You know that juvenile RA is now a separate disease. Those of us with systemic rheumatoid disease want our condition separately defined, too.

Your doctor may be right. But... rheumatoid diseases as a class are notoriously diverse and difficult to dx. And in the end, the only reason it matters is tx, for which you want to pick the rx or other interventions that are the most appropriate for the physiological issues, yes?

And no, I am not a physician. I am a wildlife biologist with just enough physiology knowledge to be dangerous.

[PMRpro Ambassador in reply to RCCO]

The NICE guidelines in the UK have been ammended and now say "Over 40" for age.

[RCCO in reply to PMRpro]

Interesting!

[PMRpro Ambassador in reply to RCCO]

The charity fought hard enough for it!!!!

[RCCO in reply to PMRpro]

I went in the website, can not find the update. Can you give me a link?

[PMRpro Ambassador in reply to RCCO]

Sorry, I live in Italy, all the NICE stuff is for UK only, I just know because I have been told by colleagues at the charity

[Hidden in reply to RCCO]

If you are in the UK...

cks.nice.org.uk/polymyalgia...

[Agoodlife]

One site ldnscience.org

[Agoodlife]

One good site to get you going.

ldnscience.org/

[benhemp in reply to Agoodlife]

And here's another:

ldnresearchtrust.org/