Low dose naltrexone (LDN) effective for my severe systemic rheumatoid disease (RD)

[Julie_R]

I am currently celebrating 4+ years of effective use of LDN for RD. I have written extensively of my journey, including blood work, sx, dose/titration, other conditions, etc, and don't want to repeat it here. I just want to start a new thread because the initial posts come up so low on any search.

I recently received my annual blood test results. LDN continues to hold my RD in 95% remission, and this is backed up by those tests. My Vectra test is again in the Low range, now second year, such that Crescendo advises I don't need annual tests. I take no other Rx drugs for RD, nor for my MS/fibro or any other minor conditions.

I am interested in hearing from other folks who have tried LDN for RA/RD. I'm especially interested in your titration experience. I started low and increased slowly. I think this may be the key. Presentations at LDN Research Trust conferences concur.

Unfortunately, it would be very difficult to conduct a double-blind clinical trial that included titration...Plus, who would fund it? LDN is cheap and generic. Even having it compounded (rice flour filler, no dye), I pay ~$1/day for my LDN capsules here in California. No drug company will make money off that. So please don't cite the lack of clinical studies showing efficacy. And medical journals don't like to publish articles about anecdotal use. That leaves it up to us as advocates, and gutsy doctors as compassionate professionals, to carry forward this drug as an off-label option.

One other benefit important during infectious pandemics, general social interactions, etc: I need no immuno-suppressant drugs for my various autoimmune conditions. My body produces anti-inflammatory and mood-enhancing endorphins every night due to LDN temporarily blocking my endorphin receptors. Partner that with an anti-inflammatory diet and lifestyle (when I can manage it) so my body has the right tools for the best immune system re-set, and I am generally much healthier than my coworkers and friends. This is not la-la land; this is epigenetics.

[allanah]

Good luck Julie, I haven't used that particular drug xxx

[charisma]

Hi Julie

I looked into using LDN a couple of years ago but did not go for it.

My nearest doc prescribing it is in Glasgow, Scotland, UK.

LDN cannot be easily prescribed via the NHS, for RA as it was approved for drug addictions.

I had a hunt around my notes (on my phone) a couple of weeks ago, refreshing my memory of cost if I ever decide to pursue LDN.

Currently, I am on drug infusions by IV.

Good luck with remaining healthy.

[Jesnaskah]

I've been on LDN for the past 2 years. I am not sure if it is helping me or not, but since I am doing okay otherwise, I dont want to mess with "good enough." I have also completely changed my diet...I no longer eat dairy, meat, or poultry. The only animal protein I can tolerate is seafood.

I started taking LDN whilst still on prednisone, but I was weaning myself off the pred.

(Was on pred, amongst other DMARDS from July 2017-Nov 2018, started LDN probably around Feb 2018). I stared at 1.5mg, after 3 months went up to 3mg, and then on to 4.5mg. I am not sure which dosing was the best for me as a higher dose doesnt necessarily mean it is better. Dosing works different for everyone.

I can't say that I am back to myself before having RA (got it in 2017 and was literally crippled), as weather affects me, and I do experience RD fatigue most of the time, plus I was an athelete before and now I can barely get away with a fraction of what I used to do. For example, I cannot cycle daily because it hurts my knees. I cannot lift heavy weights because it hurts my wrists, hands, shoulders, etc. I could go on, but I think you see my point.

My husband has suffered endlessly with Restless Leg Syndrome, I mean to the point where he has become an insomniac and feels tortured every night. The first night he tried LDN, he slept for the first time in YEARS. He was cured for about 6 months, then I guess his body adjusted. And it no longer is working for him no matter what the dose is. Prior to trying LDN he had tried everything from homeopathic to devices, to ridiculously high doses of gabapentin and horizant.

I guess my point is....like any drug out there...some work for us and some dont. And sadly, some may begin to work, and then the positive affects may wear off.

[helixhelix]

That’s great that it is working for you. Long may it continue. It does seem that for people it works for it works well.

Two questions tho’. Why do you think the LDN is altering your gene expression? I thought opiod activity in addiction was considered to have a possible effect, one reason why it is so addictive, but not aware of LDN also operated in that way.

And second question is that I've read of several people with early arthritis who have have had success with LDN, but not with severe. How did you know you had severe rheumatoid disease?

[Julie_R in reply to helixhelix]

helixhelix:

Sorry if I was unclear. Epigenetics (gene expression) is affected by internal and external environmental factors, including inflammation and stress/depression. My comment was that I need to provide the healthiest physiological environment for that nightly LDN immune re-set with good self-care (diet, exercise, etc.) There is also contribution by the LDN to the extent that it instigates endogenous (i.e. the body's) endorphin release. Basically, it "wakes up" those endorphin producers. (This is in contrast to opiates that you mentioned, which are added to the body, basically making those endogenous endorphin "muscles" deteriorate, similar to prednisone making the adrenals quit producing adequate cortisone--the basis of addiction and the reason it is so hard to taper off both drug types!)

Endorphins do affect gene expression, but I would argue in a much steadier and more stable way than opiates. For instance, pain is a known physiological stressor, and a major beneficial "side effect" of LDN is just enough pain relief to allow a person to function easily, but not so much that necessary pain signals don't get through.

This physiological-environment-as-partner concept is a common theme expressed in the LDN Research Trust conference expert panels, which are one of the best sources of information on the nuts and bolts of everyday practice of treating with LDN. In everyday language, if your LDN was working and then isn't (as well), look first to the other factors in your life before messing with your LDN dose or deciding you need to add another Rx drug.

All of my autoimmune conditions are expressed in my blood relatives, so since I can't re-engineer my genes, I can at least quiet them as much as possible.

As for severity: Please see my other posts. But in short, Vectra and other blood tests, symptoms, and previous prognosis.

[Agoodlife in reply to helixhelix]

I think it’s more a question of how much RA meds you are taking when you start LDN. I was diagnosed with very aggressive RA. Started LDN right away.At this point all my RA symptoms.disappeared when combined with Diet. I did a lot of mistakes but but in my case it helped me to get off anti inflammatories and all pain meds eventually.

[Agoodlife]

Your story on LDN is very interesting. there are in fact really an abundance of facts on how and why LDN helps with AI diseases. You can find info sources on my previous mails in this forum. The problem seems to be that discussion around LDN is stopped effectively with the lack of replies or questions that have been already answered in the facts presented. I do hope we can wake up pas to read more about LDN

[helixhelix in reply to Agoodlife]

I think there is a major barrier to people taking the leap... I like the idea of moving to a different type of management of my disease. But every time I start to drop doses of conventional drugs all hell lets loose. And that’s with careful attention to many lifestyle factors. In the space of three weeks I ended up with permanent damage to a toe. So I’m not going to risk it u til such time as there is a way of identifying who it will work for.

[Agoodlife in reply to helixhelix]

In the info about LDN it clearly states that are you on Mtx and steroids you can take LDN and it doesn’t make the effect of the RA meds less. On the contrary it has been noted that you are able to decrease the RA meds and eventually stop pain meds and anti inflammatories. RA patients are often not aware that these meds do in fact make RA worse.

[helixhelix in reply to Agoodlife]

I get that you can run these in parallel (although not sure about biologics) bit it is a huge leap of faith to then start reducing. I guess I’m not brave enough to go it alone.

And I think we have to agree to disagree about RA meds! They have given me my life back and not made my RA worse.

[Agoodlife in reply to helixhelix]

I think this is very true. If you are on biologics it may be another situation. the sites I have mentioned before give you a chance to ask questions that are answered by specialists

[Julie_R in reply to Agoodlife]

See ncbi.nlm.nih.gov/pubmed/307... for study published in 2019: "Low dose naltrexone: Effects on medication in rheumatoid and seropositive arthritis. A nationwide register-based controlled quasi-experimental before-after study." In Norway, a documentary led to a sharp increase in LDN Rx's. Consistent users of LDN decreased overall Rx's more than least-exposure users. (No control group of non-users, unfortunately.) Both drug users and daily dose decreased with more consistent LDN use, especially the analgesics. This is an example of how LDN can and is being used to decrease other meds, including opioids. I'm also aware of some folks being able to use LDN to assist with prednisone tapering.

And yes, I would love to know what factors to look for in a patient that would indicate how much LDN could help them! (Both dose and medical situation.) Higher sed & CRP rates do seem to be an important characteristic; mine have plummeted on LDN. My Vectra test had fairly low TNF-receptors (especially for a person with MS), but very high IL-6 compared to Crescendo's base RA patient cohort. I got on LDN and the IL-6 dropped very quickly, the TNF-RI not so much. So we may not know ahead who will be helped, but there are both symptomatic signs and clinical tests that can assist with assessing efficacy.

Please don't think that I am advocating for everyone to go off their mainstream RA meds. I just want to folks to know that LDN can work very well for some people, and at least help some others. And it needs to be considered as an option by the medical community and U.S. insurance companies, as well as patients themselves.

[Agoodlife in reply to Julie_R]

Can you say something about how to taper off from Predisone with LDN? Do you have an idea about dosing.I have been taking 7mg of pred for a year now. What should I do?

[Julie_R in reply to Agoodlife]

Because I never took prednisone, I am unfamiliar with your situation, and I avoid giving anyone specific medical advice anymore, no....except that if you don't feel you are getting good individualized guidance from your medical practitioner(s), that you find another one. The number of practitioners with adequate knowledge of how to incorporate LDN into treatment regimes is still not where we would want it, but as you can see from Norway's example, increasing rapidly. Good luck!

[Agoodlife in reply to helixhelix]

Look at Julies answer to me above and what pub med says.