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low dose naltrexone

  • By Julie R

    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.

    Julie

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  • By Erin Rush Moderator

    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.

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  • By Julie R

    Erin, etc,

    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’s 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.

    Thanks,
    Julie

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  • By Erin Rush Moderator

    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.

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  • By Julie R

    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.

    Thanks,
    Julie

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  • By Julie R

    A quick update. My CRP is now 0.5. My sed rate is now 26. My Vectra is now well into Moderate. I’m doing well physically, not yet back to where I was before the RD flare began, but certainly not dead!

    My naturopath approved more extensive PT’s due to my visibly lower inflammation level backed up by the lower blood test numbers. Although my shoulders crunch loudly, I can now lift my arms almost straight above my head. (At the worse part of the PMR phase, I could only lift them 45 degrees to the side.) I can also do the PT’s (and everyday tasks requiring extensive joint use) earlier in the day without repercussions. My knees, hips, and elbows require TLC, avoiding repetitive motion, but amazingly functional given what they’ve endured. The roving pain and inflammation in my hands and wrists is now quite rare (but it never was the major feature of my RD.)

    The symptoms I’m working on now deal with the damage to the bones, tendons, joints etc in my torso and neck. The improvement is not as dramatic, but still worth the effort. I’ve gotten to the point where surgery wouldn’t be worth the money or trauma to my body.

    I still have concerning nodules in my lungs, but they are stable, and I rarely cough. I’ve had less vasculitis in my feet. My heart rate and blood pressure have normalized. My vision has improved. The neuralgia of my legs below the knees is long gone. My weight is holding and I no longer look like a cadaver.

    I’m working on the reflux, trying to figure out the origin, beginning to think it may also be related to my spinal deterioration and deformation.

    Winter cold makes me a bit stiffer, but nothing like I was.

    I feel tremendously lucky and grateful.

    Julie

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    • By bek3131

      Hi, I have been taking LDN for RA and Hashimoto’s for a couple years with fantastic results. My 16yo daughter was just diagnosed with RA and we put her on LDN but the pediatric rheumatologist said LDN only masks arthritis symptoms (pain) and will continue to put our joint damage at risk. I hadn’t heard that before in the (limited) research I’d done. Does anyone have more information on this or maybe it’s here and I’m not reading it… do any of the test results you all are tracking show that LDN does affect joint erosion similarly to methatrexate or humira?

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  • By Mariah Z. Leach Moderator

    Hi Julie R ~

    Thank you for the update – glad to hear that things are improving somewhat! I know from experience how frustrating it can be when improvement is slow, so I truly commend you for continuing to face forward and experience gratitude. I truly hope that things continue to improve for you!

    Best,

    ~Mariah~ (Site Moderator)

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  • By Julie R

    Mariah,

    Maybe I wasn’t clear. I’m not frustrated AT ALL! Quite the contrary. Maybe it is because I have lived with disabilities and limitations most of my life; I can’t remember not having to manage my conditions and limitations in order to have the best possible life. Usually I have to do a lot more work, and the improvement comes harder and slower! To find a tx that has so dramatically and rapidly turned around such a poor prognosis, well, it is a true gift.

    However, as a scientist (and because I don’t want to be one of those “over-enthusiastic” my-way-is-the-only-way advocates), I reserve judgment on the potential benefits for other folks with RD who may want to try LDN, and I quote the anecdotal stats above. I also reserve judgment on the potential long-term benefit and side effects of LDN for me individually. I’ve seen too many “wonder drugs” that ended up being pulled off the market or getting black box warnings after years on the market. (And I prefer not to be blind-sided!)

    And as a realist, when s__t happens, I have a short cry, then quickly accept the situation. This includes the re-dx, and damage done in 2015. Then I get to work. I know I may have limited time to reverse the RD damage, so I am putting much time and concentration into discovering the best methods and applying them. Also, as someone who “Thinks Different” and is fiercely independent, following someone else’s direction unquestionably is not in my play-book. I consult/research/learn, weigh my options, and decide on a course of action. Then, because it is my decision, I have total buy-in and control over who and what I believe, what I do, how long, how to decide if it is successful, when to change course or tweak… and I take responsibility for consequences.

    Nonetheless, for me to say I feel tremendously lucky and grateful…well, given my personality, you can bet that’s an understatement. In short, no commendation required.

    Julie

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  • By denisemichele

    Hi Julie,

    I am very interested in hearing more from you. I was recently diagnosed with RA and am hesitant to take any of the traditional medications. I have been supplementing and also am going to start the ldn. I have been doing a ton of research and was happy to find someone who is seeing positive results.

    Denise

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  • By Julie R

    Denise,

    I’m in the middle of field season and also am fighting harassment at work again, so I’m super busy and can’t write much. Please read my posts concerning titrating to optimal dose. Also, get all your blood tests together, and follow them. I’m very interested in whether LDN works best in folks with initially-high sed rates & CRPs. (See Younger et al.) Also, make sure there is no dye or allergic-to-you filler (we use rice flour as my filler) in your capsules; you don’t need a wild card confusing your titration.

    I continue to improve, despite the hostile work environment and a long cold winter. I got some psych therapy (EMDR) for the former, and am advocating much more successfully and healthily for myself (and for other PWDs) now. I am getting a type of ortho-bionomy using vibration to loosen up my joints/tendons, and am driving much better now. Also, we are working on my neck, which was jammed together by landing on my head as a child, then whiplashed, now stiffened by RD…and it is improving, too. My X-rays were scary, and I don’t want to be forced into surgery.

    My blood scores just keep getting better. My naturopath suggested I do the high-sensitivity CRP; my score was 0.05. Yup, that is not a typo. My sed rate is now 14. My anemia is totally gone. My WBC’s and platelets are dropping at a comfortably-slow pace back towards my usual.

    Yesterday, I hit 106 lbs. At the worst of the RD, thanks to muscle-wasting etc, I was below 100 lb. I will never have the energy of a non-disabled person, but I am working almost fulltime during field season, walking up and down hills wearing a day pack (which I couldn’t bear for almost a year due to the AC joint pain) through slash (ditto due to hip and knee stiffness).

    This fall, I will do another DEXA. I’m hoping some of the weight gain is back into my bones, but that would be highly unusual. If nothing else, I hope the pathological bone loss has stopped. The X-ray did show extensive demineralization of my vertebra. I do know I’m getting muscles back, such as they are–I’ve been very slim since I got MS both due to diet and due to inability to do aggressive exercise. At least I don’t look like a cadaver.

    The reflux is actually esophageal dysmotility, and is probably related to both the MS and RD. It is erratic but generally better. It acts up when I’m stressed or doing too much office/computer work. I now recognize it as something I’ve had in the background for many years…like much of my RD.

    I’m wondering if the 2.5 mg dose may be too low to reverse my MS/fibro symptoms. They still tweak with stress, and the long-standing plateau limitations are likely permanent damage by now. But the LDN has pulled off a miracle on the RD, and I know a higher dose doesn’t work on it, so as long as the LDN doesn’t aggravate the MS/fibro, I’m happy.

    My naturopath and I decided to go to a 1-year interval for the Vectra, so I won’t get another test until November. My insurance carrier, Blue Cross Blue Shield, won’t pay for the test anymore, but Crescendo limits our co-pays. (I’m advocating there, too.) Nevertheless, it is a fairly expensive test, and we think 1 year will be OK now. A doctor/scientist at Crescendo told me my high IL-6 and relatively low TNF-RI are typical of polymyalgia rheumatica, with the IL-6 dropping in folks who successfully treat their PMR with steroids. (and now me, treating with LDN) Since this severe bout of RD was polymyalgic-onset, I found that very interesting. My type of aggressive PMR-onset RD typically has higher sed rates, often is resistant to both standard DMARDs as well as biologics, and has a poor prognosis. If LDN can help other folks like me (i.e. I am not a fluke), it will be a game-changer. I don’t have a lot of hope for double-blind clinical trials…especially given the need for titration to find optimal dose. It likely will take a movement by the patients (and their doctors) themselves. Won’t be the first time that has happened. But our case will be a long stronger if we have the statistics to back up the anecdotal success stories, and if we understand better why LDN doesn’t work in the cases where it isn’t successful.

    There will be another LDN conference, this time in Portland, Oregon, this September. If you haven’t already, check out the LDN Research Trust, and get Linda Elsegood’s book.

    OK, gotta sign off. Good luck, and I’d be happy to discuss any of this or any other LDN logistics with you on the phone; just email me privately with your number.

    Julie

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  • By Julie R

    Denise etc,

    Oh, I am an idiot! I checked the test results again, and the 0.5 CRP is in mg/l and the 0.05 HS-CRP is in mg/dl. So they actually are both 0.5 mg/l. Well, it is still damn good. 🙂

    Julie

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  • By denisemichele

    Hi Julie,

    Thanks so much for your response!! It was so thorough and gave me hope that I can combat this disease. I am sorry that you are having so many issues with your job. I have worked with people with disabilities for over 20 years, including employment, so I am familiar with the issues that come up. I am fortunate that I work for an agency that services people with disabilities.

    I just received my diagnosis in February after several flares where I could not move my fingers or wrists at all. One of my hands was flaring every other week. The gp’s were basically useless and first said cellulitis, then mrsa and I was on a three different antibiotics, which enraged me because previous to that I hadn’t been on an antibiotic in over a decade. I am a healthy active 49 year old who used to work out up to four times per week. I started googling and went back to the doctor and said maybe I have gout. He actually said to me, why didn’t you tell me that yesterday. He sent me for bloodwork for gout and RA. The gout came back negative and the RA came back positive. My blood levels in Feb and March respectively were:

    ESR, Westergren 6 and 4
    CRP .1 and .1
    RF Factor 64 and 72
    ANA Direct positive and negative
    CCP IGG 34 in March
    HLA-B27 antigen positive in March
    Vit d 14 in march
    T3, total 64 in march

    The first rheumy I saw told me I needed to take an over the counter vitamin D and go on Mexo. I told him I wasn’t interested in that drug and wanted to try and handle it naturally and he wished me luck. I found a board certified Rheumy who also supports alternative medicine and she said that it was irresponsible that the first doctor did not prescribe high dose Vit D. She prescribed Vit D and also recommended a slew of very clean supplements including fish oil, a mutlivitamin and probiotics. I started on the D and the others and within two weeks I actually had my energy back. I felt like a million bucks and the pain was subsiding substantially. She wanted to then put me on Plaquinil, which I also refused. The prescription for vit d ran out and within two weeks my hands flared again. I truly believed it was due to the Vit D and purchased some d and K from Dr Mercola and am now taking 7000 mg per day total. I am having less pain again and am waiting on results from updated D levels.

    I am working on cleaning up my diet. It is not exactly where it needs to be, but I am making progress. I know that I can do the appropriate diet as ten years ago, I ate clean in order to lose weight and lost 70 pounds in 14 months and felt better than I ever have. I believe in the power of food in healing the body. I read about LDN and have a prescription now and will check into the fillers that they use. I want to add it too my tool box and will start it soon. I will also check out the posts you referred to on dosing because my Rheumy admitted that she was basically shooting in the dark. I am waiting to see if I have another flare after I see what my Vit D levels are. I really want them around 65. I know that bringing them up from that level from 14 will take some time.

    I am not clear what a DEXA is. I am concerned that I have bone loss because I was on Depo Provera for seven years and not supplementing. My big bad….and interesting….whether related or not….I stopped the Depo and had my first flare within a month. Not sure if there is any correlation there and will probably never know for sure. Additionally, I went through an extremely stressful personal crisis in November and was not taking good care of myself at all and often wonder if that set off this horrific disease.

    I have read that LDN has been very success with Fibromyalgia and MS. There is less out there that I have found in reference to RA, so I am happy that you are seeing success and anticipate that you will also see success with your other autoimmune issues.

    I just did the Vectra DA and am waiting on the results. I am very excited to see that number and get a better idea of how active the disease is in me. I also had issues with Aetna. Basically, they are going to consider it an out of network benefit. I am not sure how often they will pay for it, but I would like another test done in six months.

    i am very excited to speak with you in more detail and would love to privately email my number, but can’t figure out how to do that.

    I also want to keep an eye on whatever I can do to help get the word out because I think its a sin that more research is not being dedicated to this because of money. (And that comes from a women whose ex husband is a PhD level immunologist researching for big pharma). He explained all of the details of why big pharma won’t pay attention to this and its enraging.

    Please let me know how we can get in touch offline.

    Denise

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  • By Punam

    Hello Julie,
    I want to thank you so much for sharing your experience with LDN in so much detail. It has been really helpful in my decision-making process.

    I have been looking at switching from my 5year treatment protocol of 100mg of Minocycline 2x a day for a long time. The Mino has worked well and I was in remission for within six months of starting it. But taking an antibiotic at these high dosages is, by definition, problematic and, because the side-effects are mostly in the gut – where most of our immune system is located – it has also triggered some serious bouts of illness and debilitation which I have had to take expensive naturopathic supplements like L-GLutamine, N-acteyl glucosamine (NAG), and DeGlycinerated licorice (DGL) to keep the worst of the gut problems at bay. I have also had a lot of skin discolouration from the Mino and I know from the research that it can blacken your heart valves and internal organs. In January I caught a very bad flu bug which sent me to bed for almost eight weeks. At the end of it I felt my RA had surged back and, sure enough, my March bloodwork confirmed that where I had been gotten my RF down to normal levels (22) in the remission period it was now soaring back at the levels I had when I was first diagnosed (185). My ESR and CCP were still low because I take very high doses of full spectrum curcumin everyday. But I felt so sick. Not only could I not walk without stumbling and limping (knees, ankles, SI joint) the shooting pains in my knee, wrists and ankle were back in full force. But the worst was the exhaustion – I was sleeping badly (unusual for me) getting up late morning and, on the days I could function at all, it would take me four hours to get to work and then I could only stay at it for a couple of hours before I was toast.

    LDN was always the most interesting alternative option for me since I cannot bring myself to pay for, or risk the biologicals which many studies say have a 60% efficacy rate, and even when they do work often stop working after a couple years, and death as a listed side effect. I also cannot imagine pumping my body with chemo (Metho) for the rest of my life.

    So in consultation with a doctor here who uses LDN as a core treatment in his cancer clinic and his naturopathic colleague – I started the LDN about two weeks ago. The amazing thing is that it started working to bring down the worst of my flare symptoms within the first 48 hours. I started at 2mg a day (at night) and titrated up to 3mg a day a week in. My body is already feels 2/3 better physically.

    One thing I didn’t expect was an initial period of feeling depressed. Some of this has to to do with the real conditions of my life but I also read in The LDN Book that this can happen when you start taking it because it blocks your pleasure response to the things you usually turn to cope or to find solace – exogenous opiates like food, booze, etc.. Until your body fully kicks in to boosting your endogenous – internal – opiates – you can feel depressed. It has slowed down some as time passed and I’m happy to read that LDN is also used to treat depression so I hope it moves the other way sooner than later.

    I’ll get the first comparative bloodwork in a couple of weeks and am hoping the waning symptoms also register as lowered RF.

    Anyway thanks again Julie – I did a lot of reading and hesitating before I took the leap and your blog posts tipped me to take action. So far I am really happy with the physical results and keeping my fingers crossed that my overall results mean I can start titrating off the mino in about six weeks. I’ll post again when I have more news.

    Sending you fierce hope that your results keep showing the amazing improvements they have so far.
    Best wishes and much gratitude
    Punam

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  • By Freethinker28

    Hi All, I was diagnosed with RA in 2014. I decided to go the “natural” way to at least try to control the disease/symptoms. I started taking supplements right away in high doses (curcumin, Vit. D3, krill oil, Myco and others) My disease did not get worse but I didn’t get better either. At the beginning of this year, I started feeling exhausted all the time and I started seeing RA activity involving more joints than before. I also experience problems with my eyes (itchy, bloodshot and teary) By Summer, I felt like I had the flu all the time. I felt tired, rundown and downright sick. I knew that I needed to do something else before this disease brought me down. I started researching more in depth for alternative medicines and I found the LDN website. Now, I never took ANY prescription drug for my RA since diagnosed, and taking this drug wasn’t particularly appealing to me. After doing quite a bit of research and talking with people that were taking it, I decided I was going to give this protocol a try. That was the easy part. The hard part was finding a doctor that was willing to prescribe it (my regular doctor just looked at me as if I was going crazy and my Rheumatologist made fun of the idea…yeah) They had never heard of anybody using LDN for anything other than addiction, and they were not willing to embark on this trip with me. Too bad…for them.
    Happily, I found a Naturopath doctor that had plenty of experience in working with LDN for many diseases including RA. That was a month and a half ago. He started me at 1.5 mg every night for two weeks. After the first week on LDN my exhaustion was almost gone and I could go downstairs normally (no more one step at a time for me!) I no longer have any eye symptoms and my right hand middle finger, which was very swollen and painful before, it’s almost back to normal. I can make fists with both hands again! I am now at 3 mg per day and my grip strength is getting better. I no longer have pain in my feet, arms or shoulders. This drug has been fantastic! I know a lot of people are reluctant to try different “non-conforming” protocols, but this one is worth a try. You won’t regret it. Good luck to all!

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  • By Spoonie87

    Hi

    I’ve been on LDN now for my RA for about 2 months now, doctor says that i will see results in my blood in a month or two.
    I’ve been on every kind of anti-rheumatic drug but nothing has worked.

    Rheumatologists say I need biologics but I’ve heard long term its very risky, and its also very expensive. So I found an awesome physician specialist who’s put me on LDN and on a strict no gluten, no diary, no preservative diet. He has also given me Solal supplements to take along with it. I can already feel the difference with the diet change and the meds, pain is not too unbearable like it used to be. Yes, I have my up and down days like every spoonie does but I’m doing alot better on LDN than the anti-rheumatic drugs.

    Other doctors and rheumatologists told me “it’s either the medicine kills you first or the disease gets you first, there’s nothing they can do”… So I’m so glad I found this physician.

    I’ve had RA since I was 19, lived with it for 4 years and then went into remission just until last year when it reared its ugly head again. I’m 30 now, and its so scary sometimes cause even though LDN helps, you still have your good and bad days and these I have to face alone, no family or loved ones. It scares me alot, so thank you for sharing your story, atleast I know it worked for someone else out there, it gives me hope. 🙂

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  • By Julie R

    Hey folks,

    So glad that you all are sharing your LDN experience! It’s important that we get data from both standard tx-naive folks and those who’ve been through various drug regimes. Also folks who are starting from both low and high sed & CRP’s. My RF has always been in the normal range; it’s my anti-CCP (ACPA) that spiked. So I’ll be curious if your RF falls at all, Punam, and whether you were able to successfully get off the mino. We need all the data we can get, so please, all of you, keep posting.

    I was laid off for the season a couple weeks ago, and am trying to catch up on all the postponed to-do’s created by extra work hours and the EEO Complaint. Since my lay-off, we’ve had beautiful wx. Now we have a few more days forecast, then storms turning to snow. We’ve gathered a bunch of firewood, which we schlep to the truck to avoid driving said 2WD truck off-road (who needs a gym?) I need to rake leaves, dig out planting beds, lube my truck, chop the firewood, and do errands on my bicycle before the storms start. I am aware every day that the ability to do all these things, with minimal pain, and enough energy to sustain this all day (with small reading breaks), is a tremendous gift from the LDN. (Also, my orthobionomy tx was very helpful, but my practitioner just moved to Idaho…boo!) But it’s also crucial that I do all this when the wx is good, as my RA and MS both dislike cold, my body requires activity to be healthy, and my Vitamin D must be absorbed from the sun (not supplements.) So I’ll postpone further comments.

    I bought a live stream to the LDN conference, which I can watch when I have time…I didn’t have that time in Sept. You can still buy a live stream; you just can’t ask questions in real time. I have (probably) 2.5 more months off before I return to work, and I hope to squeeze in some activist time for insurance coverage of LDN and the Vectra blood test.

    I see my naturopath in a couple days and she’ll draw the Vectra test, and order others. I’ll comment more when those results are in.

    Julie

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  • By niteowl

    Hi Julie,
    So glad to see your progress with LDN! I was on Minocycline and then Doxycycline for my Rheumatoid Arthritis and eventually had drug induced Lupus. Now I’m mostly just on corticosteroids but having some undesirable effects! I would really like to try LDN, especially after reading your posts.
    I mainly wanted to keep this thread alive but would also like to know if you have a link to the LDN stream?

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  • By cindy67

    Hi all,

    I’m a newbie here. Was diagnosed with RA in February and immediately did my research and found LDN. And no, I could not get my rheumatologist to write me a prescription (no clinical studies available that show results bla bla bla, the usual story, you get it) so I found an online chemist in Scotland to do an online prescrption (I am in Sweden by the way) and started my LDN i March (Good Friday, I remember that). I did not have any pain to start with and no other conditions that seem to pester those who have auto-immune disease. I feel more mobile and sometimes don’t even think about it.

    My question is if any of you who wrote earlier that you would be going back to get your RF tested, what were the results? My rheumy said that I was fooling myself in not feeling stiffness (makes me wonder how LDN can do that, must be hell of a tricky drug) and that it would not stop or decrease the erosion of the joints and cartilage.

    Would be great to read some more feedback on the follow ups.

    Cheers!

    Cynthia
    Stockholm, Sweden

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  • By Julie R

    Cynthia,

    RF is more of a diagnostic, not a prognostic or drug-effectiveness monitoring metric. Because LDN is not curing, but is managing, our RA/RD it may have little effect on that score. Instead…

    As you can see from my past posts, I have always been RF-negative; it was my anti-CCP (ACPA), as well as high sed rate and CRP scores that got me dx’ed. The latter two are considered the standard markers of inflammation. My November scores (I didn’t bother with April this year): sed rate: 19, CRP: 0.5 mg/L! My Vectra test (which I’m pretty sure you can’t get in Sweden) dropped into the Low activity level. The Vectra test includes both TNF-RI and IL-6, which are two cytokines that are known to be active in RD and which are targeted by anti-rheumatoid drugs; both of those have improved as part of the panel.

    As for efficacy in halting joint, tendon, bone, connective tissue, vascular, etc inflammation and/or erosion, see my story above. LDN absolutely reversed my severe systemic RD that appeared to be on track to significantly shorten my life. (I also credit taking small amounts of undenatured collagen with it at night for dropping the anti-CCP antibody.) This is extremely rare, even with biologics. Note I took NO prednisone, methotrexate, etc, only a bit too much aspirin for a couple months, then low dose aspirin for the remainder of a year until it zapped my digestive system. Also note I use complementary medicine, including homemade turmeric & pepper caps etc.

    Yes, LDN works in an unusual way, by temporarily blocking your endorphin receptors, basically triggering your immune system to recalibrate, your body to heal itself, not just producing more endorphins so you feel less pain (and often, are calmer and happier!) We are finding the same thing with cancer…that if we can trigger certain types of immunologically-active cancer cells to differentiate, they will kill the type of cancer cell they were. This approach can be extremely effective. I realize it can be hard for allopathic doctors to accept, but eventually they will be convinced by results.

    Unfortunately or fortunately, LDN is cheap, so only a patentable derivative will be worth clinically testing. But insurance companies and gov’ts are very interested in saving money. So we need to crowd-source anecdotal results. (Remember that many drugs are prescribed off-label, not for the original condition for which they were tested.) Therefore, it is REALLY important that we get our own data, and document our journeys.

    Along those lines, please report whatever of the following you feel comfortable disclosing: Are you taking liquid, compounded caps, or tabs? I see from your other posts that you “graduated” to 4 ml; that would appear to be liquid and I’m not sure how that translates to mg? What was your titration protocol? Have you tried to increase or decrease since hitting your current dose? Any side effects (think hard; there may be some that seem unrelated, they may be good, bad, or just are)? What sx got you dx’ed; are they gone or decreased? Were/are you anemic? Please report any blood scores that may be applicable, not just sed rate and CRP. (See my previous posts.) What other lifestyle factors did you have and have you changed any of them? Diet? Exercise? Stress reduction?

    Any details you want to ferret out and disclose will help. The LDN community is starting to understand that “side effects” or lack of efficacy may be signals that the dose is either too high or too low, respectively. I discovered that I was allergic to the dye in my capsules; my compounding pharmacy now does not use dye anymore. Similarly, the filler matters. Younger et al’s review study made the incidental observation that their study participants who happened to have higher sed rates got more benefit from LDN, and recommended that it be studied for PMR and RA…that was enough for me to experiment on myself when I couldn’t find a clinical study. I’m glad I did. There are so many particulars in making LDN individually optimal; no study could accommodate them all. Not just dose; many frequent prescribers of LDN comment that LDN alone won’t manage your condition. (e.g. you can’t eat garbage!) We need to know not only whether LDN works (as for some of us, it obviously does) but also how to tailor its use to each person, and how to use complementary medicine to enhance LDN’s effectiveness.

    Thanks,
    Julie

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  • By cindy67

    Hi Julie,

    Thanks for your input. It gives me even more confidence in sticking to LDN.

    I am doing clean eating and have been since 2013 – skipping processed, sodas, sugars, gluten, eating raw and organic and doing supplements as well. I also started doing collagen twice a day. I exercise at least 6 days a week á 40-45 mins and sometimes do all 7 days but tone down a bit on the 7th day.

    I am not 4,5 mg and did the usual gradual process of from 1,5 mg. I have no pain and have not had any actually and my stiffness has really improved or rather dissipated. Some days I don’t even think about it. I’m not sure what the Vectra thingy cos my rheumy just keeps on harping on and on about the RF. I will look up my journal and check what the markers they checked for. I did get a high reading of iron in one of my blood work result but the rheumy said that could be due to my working out with weights ie from the muscles (??). No other problems – I even did a lung/chest xray and there were no problems there.

    I was doing liquid and then I asked for something easier to travel with and now I’m doing capsules. Frankly I don’t feel any different when switching to capsules.

    Cheers!

    Cynthia

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