October 4, 2016
Is anyone else taking low dose naltrexone for their rheumatoid disease? I'll keep this short because I've tried to post on this topic before and my post didn't "take" wasn't accepted, or whatever.
I have polymyalgic-onset severe systemic rheumatoid disease. In October last year, while titrating up the LDN, my Vectra score was 20 points into the High category. By Nov/Dec, I was at optimal (for me) dose, 2.5 mg. By April, my Vectra was one point above Moderate. I had basic blood tests in August. My sed rate has gone from 80's & 90's to high 20's. My CRP went from high 20's to 1.6. My anemia is gone. My fatigue has dialed way back. My range of motion is much better. My muscle-wasting stopped and my weight is holding. My cough stopped. My pain is approximately 20% of this time last year.
Nine months into LDN, I thought I'd be dead, but I worked a decent field season, when last year, I couldn't do field work at all. (I am a wildlife technician/biologist.) This despite shingles in April and heat triggering my MS/fibro a bit in August. I am not where I was two years ago, before the RD started, but I have my life back.
Now let's see if this post will "take." I've been posting on HealthUnlocked, no problem. But here, apparently, I'm either posting incorrectly or I'm being blocked. Repeated searches of this web site still come up negative for naltrexone.
October 4, 2016
Hi Julie! I am sorry you have been having issues with our website. Please feel free to let me know if they continue.
I am glad that LDN has been working so well for you! That is always the best possible outcome one can have (short of a cure) when taking medications for RA. It sounds like you have overcome a lot to continue doing what you love and I think that's great.
As far as LDN, since it seems to be a relatively new treatment, we have some information on it, but not a lot. As it becomes a more widely used treatment, I suspect we will have more information and conversations on this website about its usage and efficacy.
Here is a link to a conversation in another part of our forums about LDN that you might find interesting -- https://rheumatoidarthritis.net/topic/low-dose-naltrexone-2/. Please let me know if the link doesn't work for you or if you have further questions.
Thanks for your question and for your perseverance in posting here! I hope you have a good evening! Best, Erin, RheumatoidArthritis.net Team Member.
October 7, 2016
Hey, my post did take this time. My previous post (that didn't take) referenced the same article that you hyperlinked in the post you linked above (Younger, et al), as well as The LDN Book by Linda Elsegood the LDN 2016 conference live stream, and the LDN Research Trust. As a biologist, I do my own web-surfing, mostly on PubMed (NIH) Both the book and conference are written/presented for health professionals and public, and as such, can get pretty technical.
But I need the technical aspect, because I have multiple conditions--not just RD/MS/fibro but pathological rate of bone loss over the past 5 years resulting in severe osteoporosis, Raynaud's, hormonal imbalances, and more (most linked to the multi-autoimmune, some maybe not.) Plus family health history--genetic risk. So TNF-alpha blockers are not a good fit, nor anything that would thin my bones more, nor raise my risk of cancer, and so on. Naltrexone/naloxone at the higher doses has been around a long time, and we know how it works. We are still getting minor surprises for the low doses in LDN, but we know the basics.
The Vectra test has been quite helpful with designing and tracking my treatment; it not only gives the overall score, but breaks it into specific markers. So I can track TNF-alpha and IL-6 and more. We in the U.S. have access to this test; I guess not much or at all in the U.K. (or so say the folks posting on HealthUnlocked/NRAS.)
If you want to try LDN, get an experienced practitioner. My naturopath evaluated my hyper-sensitivity to most drugs and list of conditions (including quite underweight now thanks to RD), and used a very conservative titrating method: 0.5 mg to start, up 0.5 mg every 2 weeks, tried twice to go to 3 mg (which made me anxious/irritable and didn't work as well for the RD), then settled on 2.5 mg. Optimal dose can vary from 0.5 mg (thyroid issues) to as much as 5 mg for some conditions/hefty folks. So you want someone who knows what they are doing. Don't just start on 4.5 mg because "that' standard dose".
Your MD may not want to prescribe LDN, but there are a growing list of practitioners who will. I live in rural NE California; I drive 95 miles each way, and pay out of pocket, to see my naturopath but she is worth it. And I get my LDN through a Redding compounding pharmacy.
Speaking of compounding, you can't get LDN caps without a filler; the quantities are too small. After a reaction to the lactose and dye used in my first caps, I now get rice flour filler and no dye. Much better! In the UK, some folks take LDN in liquid; don't know much about that.
Also, for me, the time of day (or in my case, night) that I take LDN matters. This is individual. Read up on the options; then, working in concert with your practitioner, test them out.
I'll add that I take (and have taken) no other mainstream Rx or OTC meds long-term for any of my conditions, other than aspirin when we thought my RD was polymyalgia rheumatica. High dose at first to get my sweetheart through cancer surgery for first 2 months, then low dose (reduction ordered by my FNP at the time) for another year. But even that eventually (probably) caused digestive issues (reflux) quit in March, and very quickly my body adjusted to not having it.
I don't take LDN in a vacuum, though. I have managed my MS (still relapsing-remitting) for 30+ years with a strict version of the Swank diet (virtually no saturated fats), with personal anti-inflammatory tweaks. I take several herbs, mild supplements, and a special B-complex. I'm taking micro doses of undenatured collagen, which I credit with knocking down my anti-CCP scores. I practice a combo yoga/chi gong/stretching/PT’s daily, I bike to work, and walk cross-country for my job. I am passionate about my work. I have a very political job, but I balance that with much mindfulness time in the woods (both work and firewood collecting!). And I have love, laughter, honesty, and sanity at home. And more. My naturopath, the docs and researchers who work with LDN, and I all agree that LDN works better in combo with this lifestyle approach. But none of this could turn the RD around; I just kept progressing, fast, until I got on LDN.
I'd rather not take any drug, but if I have to take one, the benefit/cost analysis comes up with LDN as my personal best solution. I feel amazingly lucky that I have done so well; frankly, we didn't expect me to even tolerate the LDN, much as less have it save my life.
I'll write more later (a few weeks) when I have more time. My work season is wrapping up. I figured out that the only way I can search for naltrexone in the discussion forums, and see the four entries so far, is to be in the forums when I'm searching. Searching the site from the Home page just results in blog and Stories posts.
October 9, 2016
Wow, Julie! You *have* done your homework! Would you mind if I link to this conversation in the future when other members ask about LDN? As I mentioned above, it is still considered a newer treatment option, so even a community as diverse as ours can use more information on it.
Thanks so much for sharing and I am sorry if my initial response seemed a little basic in light of what you just shared!
Thanks so much for your thorough and enlightening response. I hope LDN keeps working for you.
Best, Erin, RheumatoidArthritis.net Team Member.
October 10, 2016
Erin and others,
Yes, you may link to this thread. However, I want folks to understand that my posts are not advertisements for LDN, and this is only my experience. As the ads say, "your results may be different!" I began this thread to gather info on others' experiences. I related my experience, especially the specifics of treatment, monitoring, and results, in the hope that others would also then feel free to share the same.
To my knowledge, use of LDN in RD is still only anecdotal. I looked for a clinical trial when I began using LDN, but couldn't find one. From the anecdotal evidence I've seen, my response has been unexpectedly good (statistically speaking) given my type of RD. So far, the numbers for RD overall seem to be coming in similar to other RD meds: 1/3 not helped much or at all, 1/3 helped a bit, and 1/3 helped a lot.
Since Younger et al noted that the folks who had other conditions who were helped the most by LDN tended to have higher sed rates, I'm curious if this is also true of people who have RD. Maybe my polymyalgic onset, with such high sed rates, is part of why LDN has worked so well for me??? I also wanted to mention the Vectra test as a currently available and potentially stronger method of monitoring (compared to sed rate & CRP) until and when we do get clinical trials of LDN for RD.
For 20 years, I've had mild cutaneous vasculitis in my feet, Raynaud's in my hands, very crunchy shoulders (although no pain or restricted movement). Although a rheumatologist thought it was mostly psychological, my GP's and I began calling it "undifferentiated connective tissue disease", but the dx was complicated by my also having MS. Ten years ago, I developed a 4-month-plus inflammatory cough, and, shortly after, several bouts of severe right back/shoulder/neck pain at the site of an old firefighting injury (which decreased 90% with glucosamine sulfate). Eight years ago, I finally went through menopause, but I dealt with severe hormonal imbalance both before and after. Five years ago, the vascular issues increased markedly, accompanied by the pathological bone loss. We suspect I had the non-arthritic part of RD instead of UCTD.
Could taking LDN sooner have helped? My sed rate jumped around, but it and my CRP (the few times it was tested) were generally quite low. My only previous anti-CCP test, in 2008, was <16. My ANA has been quite high (up to 1:1280, speckled) but lower (and homogenous) or negative the past few years. I don't know.
I am still trying to figure all this out, in hopes that other people could catch their progression sooner than I have. I've been left with what are probably permanent physical limitations, to add to those from my MS and fibro. I am not complaining; I am alive and can do far more than a year ago. I am finally dx'ed--my mother and grandfather never were, but they never got the severe arthritic flare I've had either. But I'd like to spare others from what I (and my mother and grandfather) went through.
I'm hoping to add LDN to our tool chest. One way that can be done is for us to know more about the who, when, how, and why of the use of LDN vs RD.
If the use of LDN for RD does prove helpful in studies with higher sample numbers, and it is adopted by mainstream docs and insurance companies, it could open up another avenue of treatment for those who either through contra-indication or general treatment philosophy do not want to pursue prednizone and/or methotrexate. As all of you know, swift treatment upon diagnosis is critical, due to RD doing much of its damage in the first two years. So, as you also know, the pressure to chose a treatment quickly is intense. Currently, if you refuse "standard of care" treatment, you may (as I was) be shown the rheumatologist/doctor's office door. Doctors have the option to use drugs "off label". But they won't do it without mainstream acceptance.
I hear (and felt) a tremendous amount of angst among the newly-diagnosed because our other initial choices are so draconian. As I said, I tried all the "natural" methods I could find (while I thought I had PMR, and while I was waiting 4+ months to see a rheumatologist), so I went through a lot of that research and deliberation over a more extended period than most. I knew, since my anti-CCP was rising, there was a chance I did have or could develop RD. Prednisone is standard of care for PMR; I considered but realized I couldn't take it. So I did consider all the other RD drugs. I basically was pushed into LDN because the need for tx was so obvious, and all the other choices looked so terrible!
LDN has the potential to be a good "starter drug". It has mild side effects (although we are still learning about those), potential to also help common comorbidities (usually other autoimmune conditions), and relatively low cost. This could make LDN an easier choice, and get folks into tx sooner, and with less irreversible side effect damage if it doesn't work. The question is, does it work well enough and fast enough in enough folks to be accepted as first-line tx? And then, how do we use it for best effect?
Naltrexone is a cheap generic drug. A fraction of naltrexone could be patented, and that could make a drug company enough money to research it. But right now, chosing LDN is not so easy, psychologically or logistically. We need numbers, and without a sponsor for large clinical trials, the quickest next best is anecdotal experiences.
Folks, if you have used LDN, or are considering using it, please document document document! And then share your experience. There are many anecdotal videos etc on the LDN Research Trust site, but I'd like to see us share the nitty gritty of LDN vs RD here, too. In my mind, the wider the net (pun intended), the more information we can gather.
OK, I wasn't going to write this much. I have LOTS of work to do in the next couple weeks. So I will truly go silent for a bit, and hope this is enough to get folks started.