With Rheumatoid Arthritis, pain is a given and a constant. It is the very reason that forces us to turn to drugs and medication for relief and prevention against deformity as well as protection of other joints (that are still in good functional order) against attacks.
I understand the importance of uses of drugs in treatment of RA. This is very relevant for people suffering from RA because when inflammation, pain and swellings still affect us hugely, we cannot go off medications entirely because we cannot risk our fingers turning sideways and other undesirable consequences. But, it does not mean that I can approve exposing my body to the side effects of long-term usage of these medications. Over time, a suppression of our immune system is going to invite other unwanted chronic illnesses before you can get rid of the current one.
While I’m an advocate of CAM, I do not oppose any uses of drugs for getting relief of RA temporarily. It’s necessary while we take the time, no matter how long, necessary for holistic healing. For my post today, I like to cover on a drug known as Low Dose Naltrexone (LDN). LDN is not very mainstream and not many people even know about this. It has come to my attention that LDN may be one of the newer but rarer drug that may hold promise for autoimmune diseases, including one of RA.
Before I begin my introduction of LDN, I have to be truthful that I have not any experience with LDN myself. Well, let’s not say entirely no experience. Fact is, I tried to start myself (without prescription) on LDN some times back then, but due to a major setback that could not be overcome, I gave up on it in the end. I was lucky to have gotten myself a row of naltrexone the first time round, but on my second order, the drug could not make it pass my country’s custom clearance and was confiscated. I could not produce a prescription. That was all for my personal experience with LDN – one that offered not much of a meaningful insight.
Anyway, this asides, I still like to spread words on LDN and make us aware of the existence of an alternative option to the conventional RA medications that are causing horrible side effects. Let’s first take a quick look at the following survey on the popularity and effectiveness of many conventional and alternative RA treatments for 32 RA patients of CureTogether participating in a survey.
Ignoring shortcomings of technicality of conducting a survey and navigating the results in the graph above, the top right quadrant shows the most popular and effective treatments, while the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about. Ranking highest by effectiveness (but with relatively low popularity) is Low Dose Naltrexone (highlighted in yellow circle).
What is Low Dose Naltrexone (LDN)?
Naltrexone itself was approved by the FDA in 1984 in a 50mg dosage for main purpose of helping heroin or opium addicts by blocking the effect of such drugs. In low dosage, naltrexone works by blocking opioid receptors, which in turn helps activate our body’s immune system. It also works with our body’s immune system through its interactions with our body’s endorphins. Many body tissues have receptors for these endorphins which play a role in pain relief, growth of cells and immune system regulation.
In 1985, Bernard Bihari, MD, a physician in NYC, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body’s immune system. He found that this low dose, taken at bedtime, was able to enhance a patient’s response to infection by HIV, the virus that causes AIDS. He also found that people with autoimmune disease often showed prompt control of disease activity while taking LDN, as people with these diseases are partially or largely associated with and accelerated by a deficiency of endorphins.
The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphins and enkephalin production. Such is a major therapeutic action of LDN.
LDN has Demonstrated its Efficacy
LDN has demonstrated its efficacy in thousands of cases, particularly in cancer, multiple sclerosis, lupus, etc. Within the group of autoimmune diseases, none of the patients have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there were some 400 in Dr. Bihari’s practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.
LDN is Inexpensive, but Must be Prescribed
LDN is inexpensive but very affordable. Typically, a one-month’s supply of 4.5mg LDN (ie 30 capsules) will cost only approximately USD40. The therapeutic dosage range for LDN is from 1.5mg to 4.5mg every night. Dosages below this range are likely to have no effect at all. Because of the rhythms of the body’s production of master hormones, LDN is best taken between 9pm and 3am. Most patients take it at bedtime.
The typical doctors in your nearby clinics will most probably not know about LDN. As I mentioned before, its usage was traditionally restricted to treat drug and alcoholic addiction. Now, a lower doses of 3 to 4.5mg are used for LDN’s immunomodulating properties and has not yet been submitted for FDA approval at this low dose.
Again, naltrexone is a prescription drug, usually in a large 50mg size, originally manufactured by DuPont under the brand name Revia, but is now also sold under the generic name Naltrexone. Some reliable compounding pharmacists have been grinding up the 50mg tablet of naltrexone to prepare the 3 or 4.5mg capsules of LDN, and can fill your LDN prescriptions. The most challenging task is seeking a health care practitioner knowledgeable and willing to prescribe LDN after assessing your condition.
A lot of people have difficulties finding a doctor who is open to using LDN. Fret not, here is a link for a doctor prescribing this helpful medication http://www.ldn-help.com/finddoc.html or else, surf this MS community for one http://www.thisisms.com/forum/low-dose-naltrexone-f10/topic61.html.
I Made My Own LDN at Home
Like some people out there, I have my own reason for making my own LDN. Doctors just won’t prescribe LDN. What’s more, the process of making LDN is easy and cheap (roughly costing about USD10 per month) and there are no pharmacy mistake or capsulre filler problem.
The procedure of making a liquid LDN: Purchase Naltrexone in 50mg tablet. Acquire some ml measuring equipment and a small bottle with a cap. Put 50ml of distilled water and one 50mg of Naltrexone tablet in the small bottle and let it dissolve with a little time and shaking here and there. So now, for each ml of water in that small bottle, we have 1mg of Naltrexone.
At bed time, shake the bottle. Take the desired dosage (3mg to 4.5mg), chase it down with some water and store the small bottle back into refrigerator. This way, a 50mg Naltrexone tablet can produce liquid LDN that lasts for some 14 days.
LDN’s Side Effects
LDN has virtually no side effects. Occasionally, during the first week’s use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly. As for cautionary warnings, it is best to discuss with those health care practitioner who is experienced with LDN’s use in treatment of autoimmune disease.
Noteworthy Case of LDN and Rheumatoid Arthritis
“Ten patients with RA have been treated with LDN in recent years. In all ten patients, the joint pain and swelling cleared, in some, leaving residual joint distortion. Two of the patients stopped LDN for several weeks because of travel. Both had an immediate exacerbation. One patient who was responding well on LDN had a mild exacerbation during a period of severe marital stress.”
CAUTIONS
- LDN does not cure, but it relieves symptoms as long as it is continued.
- Avoid slow release (SR) or timed release Naltrexone. Slow release formulas may not provide the full therapeutic effects.
- Be careful of inactive fillers. Some evidences suggest that calcium carbonate as a filler of LDN capsule could interfere with the absorption of LDN.
A Testimony on LDN and RA from LDN Research Trust
By jljack, May 18 2011 08:34 PM
“I was diagnosed with Rheumatoid Arthritis at the age of 54, 5 years ago. I have always led a very active life, having many hobbies and enjoying my large extended family. The diagnosis was like a death sentence…the ensuing symptoms of my RA took my life away. Although I was on Methotrexate 25 mg per week and Remicade 300 U every 6 weeks, the fatigue and pain continued, along with the inflammation and general weakness. I had lost all interest in my hobbies, and my husband started going to car shows without me because I couldn’t walk well enough to enjoy them. I would tell my daughter not to bring my grandchildren over to visit, because I was too fatigued to enjoy them. My sleep was disturbed by pain in my shoulders and hips. I was barely able to make it through the work week, and spent many evenings and weekends on the couch doing nothing. My favorite thing is quilting, and I barely quilted for well over a year. My life was not acceptable to me any longer, and the meds were absolutely no help.
I don’t just sit and let things happen to me. In the summer of 2010 I started researching “Alternative Treatments for RA” through Google, and I found the Low Dose Naltrexone website here in the states. I fortunately work with a group of doctors, one of whom is an experienced researcher and also a PhD in pharmacology. I showed her the information on LDN, and she became immediately interested. We didn’t pursue it at the time, as I was barely making it through each day and didn’t feel like going through the process of changing meds. In January 2011, a woman my doctor friend knew passed away from Sepsis resulting from an uncontrolled systemic infection secondary to her RA medications. When that happened, the doctor told me, “I’m putting you on the LDN right now”. At that time I had had a terrible winter with pain, inflammation and fatigue. I was taking 800 mg ibuprophen 2x/day and still very uncomfortable.
Three days later I started LDN at 4.5 mg at bedtime and stopped all my traditional RA meds. On day 4 I woke up and was able to stop taking Ibuprophen for the pain and inflammation.
My rheumatoid factor has gone from 127 to 66 in 4 months. I have lost weight. All (literally!) of my inflammation is gone. My fatigue is gone. Yes, I still occasionally have a day that I “feel” my feet and other joints, but the pain is easily controlled with a normal dosage of ibuprophen.
This drug has been a miracle for me, and has restored my life.
I told my primary care physician about the LDN about 4 weeks after I started it. She could immediately see a difference in me, and when she looked at my hands, she could see the evidence that my inflammation was greatly reduced even at that time. She became interested, and I gave her all the information from the internet I could find. She and her sister, also an internal medicine doctor, did some research of their own, and they are now prescribing LDN to some of their other patients. Even their own family members.
I am so excited about this drug. I participated in the interviews for the LDN Awareness Day DVD being prepared for the September 2011 conference in Ireland. I tell everyone I can about the possibilities of LDN for them, and several of them are now being seen by my PCP.”
Remember, LDN does not fight the disease. It is our body fighting them once the immune system is restored. With RA, it’s always about trial and error. No one can guarantee that it will work for everyone. Nonetheless, LDN shows a great potential in treatment of RA and merits most careful consideration. For those of you already on LDN, do share your experiences of LDN with us!
References:
http://curetogether.com/blog/2011/06/07/rheumatoid-arthritis-treatments/
http://articles.mercola.com/sites/articles/archive/2011/09/19/one-of-the-rare-drugs-that-actually-helps-your-body-to-heal-itself.aspx
http://www.lowdosenaltrexone.org/
http://www.ldn-help.com/finddoc.html
http://forum.ldnresearchtrust.org/index.php?/topic/1951-ldn-and-my-rheumatoid-arthritis/
http://health.groups.yahoo.com/group/rheumatoidarthritis-lowdosenaltrexone (online chat group for LDN in treatment of RA – highly recommended)
Melissa
August 15, 2013 at 1:28 am (10 years ago)one can purchase LDN without rx at this Israeli pharmacy
http://www.buyldn.com/
Theresa
January 20, 2014 at 10:04 pm (9 years ago)Where did you purchase Naltrexone in 50mg tablets for you homemade LDN? Did you have a prescription or can you buy it over the counter?
dianaadmin
April 24, 2014 at 11:31 pm (9 years ago)You can actually buy the 50mg tablets online (however, it’ll be another issue if it can be cleared into your country). On some of these sites, you do not need any prescription. Naltrexone IS a prescription drug and you need a RX to buy over counter. I do understand that there are some online websites where you can perform an online consultation with a dr to obtain a prescription for LDN itself and you can fill the prescription at pharmacies that compound LDN.
pavel
September 9, 2014 at 2:22 am (9 years ago)Do you know if LDN from BuyLDN.com is of good quality?
dianaadmin
September 24, 2014 at 9:42 am (9 years ago)Sorry, I don’t.
Loretta Holgate
July 26, 2017 at 2:13 am (6 years ago)Yes, I have heard from others that this site is reliable.
Janice
March 29, 2014 at 2:49 am (9 years ago)Thank you for posting my story on this blog!! I was so surprised to find it here! Hope all who read it are inspired to try LDN. After over 3 years on LDN, I am still on it and still giving the clinical information to anyone I encounter with RA. Janice – Bakersfield, CA
dianaadmin
April 24, 2014 at 12:04 pm (9 years ago)Janice, I hope that your story is going to inspire more sufferers of RA to explore this option when the typical meds are not longer working or not working at all for them. I do know of many who are starting on LDN! And, if you do not mind, I would love to feature a guest story post from you on your LDN’s experience for your RA and any information you’d like to share with our RA community out there. Let me know if you are keen to take this further. Do let me know. I can be reached at myradiary.diana@gmail.com. Love, Diana.
Julie
June 24, 2014 at 11:20 am (9 years ago)Janice, I am also in Bakersfield and have debilitating foot pain. Have not started any of the RA drugs yet but I am looking for alternatives before I poison my body. Which doctor prescribed this medication for you? I am finding most doctors are not open to this medication. Thank you for your quick reply, Julie
Wendy
January 5, 2016 at 11:44 am (7 years ago)Hi
My name is Wendy I live in Perth Western Australia I have rhematoid arthritis I’m suffering greatly at the moment very interested in taking the naltrexone does it really work thanks
Deborah Summers
April 29, 2017 at 3:38 pm (6 years ago)Hi Wendy. Did you end up taking Ldn ? I live in Sydney
Rob
June 16, 2014 at 1:53 pm (9 years ago)I’ve been on LDN (4.5. Mg) for six weeks.
Thanks for your various inputs. Like almost everyone on this site, I was not happy using Methotrexate, Prednisone and other immunosuppressive drugs – especially after suspecting prostate cancer due to a steadily-rising PSA (tumours subsequently confirmed after biopsy)
My research followed a similar pattern to those described above, but this was only after a doctor suggested I consider LDN as an alternative to the drugs which I’d been prescribed. Sadly, my rheumatologist was not interested in exploring potential solutions outside the narrow band of drugs he was using (and which in any case were only partly effective in reducing the pain)… Nor had he heard of naltrexone “anywhere in the literature”..
My own GP was sympathetic, and having read the literature I showed him, was (at 81 years old) prepared to back me in my quest, so a prescription was not a problem. I weaned myself off the daily 15 mg prednisone over two weeks, but stopped the weekly 25 mg methotrexate immediately.
Within a week, the swelling in my knees had returned, but this reversed within a week of starting LDN @ 4.5 mg.
In contrast to the good news accounts above, the respite in swelling and pain have been short-lived. My knees are almost disfigured with the swelling; and the knee pain is excruciating when rising after a seated position even for a few minutes. A short car journey sees me unable to stand straight for several minutes, with (relatively recent) pain in both hips. This hip pain appears to be tendon-related, but I don’t have enough experience to be categorical.
Further pain started some two weeks ago in my neck, lower back and both shoulders – the right shoulder pain has rendered my arm almost useless, with unbearable episodes even when lying still in bed. The lower back pain might be a result of compensating for the hip- and knee pain when trying to stand or walk, but this speculation seems only to confuse the issues, as does the sudden (painless) swelling of both my ankles. . . During sleep, both knees become unbearably painful, so that even trying to move my legs is almost impossible.
Having read the logic and mechanism behind it, I really believe that the LDN option is the way to go, yet as a “believer” I feel a bit let down. As things stand, I don’t know which way to turn – I’m even suspecting the make-up of the LDN itself, and I’ve no way to test this.
I’m temporarily in the UK (from Cape Town), currently in Coventry, and I’m hoping to find a knowledgeable doctor here who can help.
The reason for this posting is to highlight the fact that the LDN move isn’t always “cut and dried”. I’m stilll hoping for the relief so many others have described, but somewhere there must come an end to this pain and discomfort – even if it means a return to the dreaded toxic alternatives.
I don’t want to go there, but I do need to be able to walk and function – something which I’ve been unable to do for the last two weeks..
Memmi
July 22, 2014 at 7:14 am (9 years ago)Hi Rob – What did you decide to do … continue with LDN or try something else? How are you doing?
Maureen
August 24, 2014 at 4:35 pm (9 years ago)Hi all,
If you haven’t already tried Dr. McDougall or Dr. Fuhrman’s plant-based vegan diet along with elimination diets to see if you have food sensitivities, I highly recommend it. For a lot of people, food seems to be the issue and their symptoms resolve if the offending foods are removed from their diet. For others, like me, symptoms greatly improve with a vegan diet and removing foods causing food sensitivities…..
Debbie
July 31, 2016 at 3:45 am (7 years ago)Yes vegan is the way to go my husband put his in remission for 9 years via a vegan diet and stopped smoking too.
Saaraa
August 7, 2014 at 8:07 am (9 years ago)Hi, I noticed you said you initially were able to get the medicine, after you took it, did you feel any improvement?
dianaadmin
September 4, 2014 at 1:15 pm (9 years ago)Saaraa, I took my home-made LDN only for a week and I did not notice any difference.
Loretta Holgate
July 26, 2017 at 2:15 am (6 years ago)I have been taking LDN for two years. After the first four months, my Sed Rate was decreased by half. Sleep was greatly improved.
ohbaby
October 22, 2018 at 5:27 am (5 years ago)LDN works by correcting one’s immune system. This doesn’t happen overnight. To fully insure LDN’s efficacy, you must give it months (4), otherwise it might not reach its full potential. Only way to be sure if it is effective for you or not.
John Thomas
November 12, 2014 at 9:57 am (9 years ago)I was diagnosed with an acute and aggressive flare up of RA in late 2012. After a two month regimen of large doses of prednison I was able to get out of bed. Then I was extensively tested by a rheumatologist in January 2013, I began treatment with the standard methotrexate. Later, injections of a biologic was added. I saw some relief but nothing wonderful. After a year, my doctor followed with vectra-d blood panel and switched me to another biologic. Again, no earth shaking improvements. I researched alternative treatments and found this site as well as others on LDN. I stopped the biologic six weeks ago due to the extreme cost, the lack of significant improvement, and my fear of the long term side effects. I met with my doctor and she was very receptive to my decision to stop the biologic and supportive of my request to try LDN. My prescription will be ready at the compounding pharmacy tomorrow and I am anxious to get this new therapy started. My brother was recently diagnosed with Parkinson’s and is not responding well to therapy. I emailed him this information and advised him to talk to his doctor about LDN also. I’ll post later with my experience as my treatment gets underway. From what I’ve read, I’m very optimistic. Fortunately, my RA is moderate at this time and I remain functional for the most part. I’ve learned to work through and tolerate my pain. But, it is getting tiring to deal with the fatigue and never having a day without pain.
A note, though, – my insurance was willing to pay thousands per month for my biologic, but they won’t pay less that $50 per month for LDN. If this is successful, I’ll be happy to pay it out of pocket.
Terri Crookes
February 21, 2015 at 11:21 pm (8 years ago)Hello John Thomas,
I have been recently diagnosed with RA and have been prescribed methotrexate but have decided not to take it due to its horrific side effects. I to stumbled upon LDN via the net and have been taking it for only four weeks presently. As your post was four months ago I was wondering if you have any updates regarding your progress and or healing? It would be greatly appreciated if you would share your experiences with me. Many thanks
Ruth Spencer
February 21, 2015 at 5:11 am (8 years ago)I have been on LDN for almost eight months now, mainly for maintenance and prevention issues. We had a friend diagnosed with terminal lung cancer eight years ago and given 6 months to live. She heard about LDN and started on it immediately. A year later when she was still alive, her GP took xrays and her tumour had completely disappeared. When she walked into her specialist office he was dumfounded. Unfortunately, she continued smoking and didn’t make any changes to her lifestyle, and her cancer came back, but she lasted eight years more than she was given. With some precancerous issues, etc. I decided to go on it merely for prevention. My problem is that I have just in the past two weeks been diagnosed with RA and am concerned that my immune system has been “jacked up” too much and thereby causing this terrible situation I now find myself in. Wondering if I should go off it or not.
Rakesh
July 29, 2015 at 1:40 pm (8 years ago)I was diagnosed with RA in 2010 . I am currently on methotrexate and prednisone. Biologic , Actemra works good for me. But i am too scared of the deadly side effects. I tried to stop the traditional RA medicine above and started LDN on 4.5 mg but i could not wait for LDN to start working (or it was taking time for me) as all the symtoms came back with lots of pain and symtoms on new joints that were working fine before. How long does LDN take to start working , how do i switch from traditional Ra medications to LDN, or can i take both (will it effect its others effect?)
Rakesh
July 29, 2015 at 1:41 pm (8 years ago)will it effect its others effect? = will it cancel its others effect?
Julie
January 24, 2016 at 7:09 am (7 years ago)I have RA/RD (I agree it should be called rheumatoid disease), MS, & dysautonomia/fibromyalgia. I have been on LDN for 4 months, half of that time titrating up from 0.5 mg, every 2 weeks increasing by 0.5 mg, up to 2.5 mg. While I was titrating up, I continued to progress fairly rapidly. When I hit 2.5 mg, I felt more “solid”, although definitely not cured. I tried twice to go to 3 mg, but benefits disappeared quickly, and my heart rate/anxiety kicked up. So I’m staying at 2.5 mg for at least 6 months. Finding my optimal dose was key. I’m an underweight female, highly sensitive to any drugs, so my dose is likely lower than other folks’ optimal doses might be.
I’m lucky that I am in N California, and have a naturopath who is prescribing LDN, and a nearby compounding pharmacy using pure naltrexone powder, no coloring (now–I had an allergic reaction) and rice flour as the filler (again now–lactose filler gave me mild runs).
I have a very aggressive case of RD, including years-worth of milder vasculitis, inflammatory cough/lung nodules, pathologic rate of bone density loss, tendinitis, etc. I only recently developed the polymyalgic onset of joint erosion (mostly in large joints), as well as anti-CCP antibody (ACPA). But, especially in the past 2 months, progression has slowed, sed rate gone from 80’s & 90’s to 48, CRP down from high 20’s to 16, tendinitis better, fatigue way improved, cough gone, low-grade fever gone, muscle wasting stopped, weight stabilized. I think the LDN may also have helped my concurrent relapsing/remitting MS, fibromyalgia, and mood. I’m sleeping better, too. So far, so good.
No, it is not a cure, but past experience says I can’t take prednisone, and I am contraindicated for or (at least for now) decided against any of the other RA drugs. This was my hail-Mary pass. It connected. How far I will run with it, I don’t know.
Lisa
February 14, 2016 at 9:30 am (7 years ago)Day 4 on LDN and what a difference it has made! 90% reduction in pain and I can walk again (not the painful stiff ankled RA shuffle I had before where even the smallest pebble underfoot could throw me off balance and cause searing pain)
I am in Australia and found a doctor here who suggested it as the Methotrexate was not working for me and the rheumatologist had doubled my dose and added Plaquenil (which I didn’t rake as the GP suggested I try this first)
I also am on the Paddison Program for Rheumatoid Arthritis (very limited alkalizing non-inflammatory diet) and i believe this has helped a lot too.
I feel amazing and my mood has lifted my energy has come back and I am no optimistic about my future.
I love LDN!
dianaadmin
February 15, 2016 at 4:42 pm (7 years ago)Hi Lisa, thank you for sharing your positive experience with LDN. It is story/experience like yours that shed some lights on options that are viable for sufferers of RA who are looking for relief in different waters. Would you mind sharing the contact of your doctor in Australia who prescribes LDN for my personal records by emailing me at myradiary.diana@gmail.com?
DK
December 3, 2016 at 5:05 pm (6 years ago)I have rheumatoid arthritis. Before I go on Methotrexate or the toxic drugs, I’m giving LDN a try. Unfortunately, it’s been over a month now and I feel no relief. If LDN helped you, how long did it take for you to notice the benefits? And was it a gradual thing or was the relief instant? Thanks.
Deborah Summers
April 29, 2017 at 3:43 pm (6 years ago)Does anyone have the name of a dispensing Ldn dr in Sydney Australia pls? Thanks
Rebel Mom
November 3, 2017 at 6:00 am (6 years ago)Thanks for this great share. I looked into this once and ran into the same issues with doctors not willing to prescribe since its not fda approved for arthritis or fibro.With the collection of data and evidence and very low risks, not to mention costs in comparisons, crazy. I am glad there are now easier ways to become patients of doctors who can help you even if out of town or country.
Ohbaby
October 21, 2018 at 7:31 am (5 years ago)I take LDN for my severe PSA (Psoriatic Arthritis). I went from being crippled to practically not being arthritic at all. Well almost. Still get flare ups in random joints. But seriously, I went from having a hard time getting out of bed, using pliers to open bottles, to getting back on the basketball court. PSA is similar to RA. In fact the is no test for PSA. They use the RA tests and others in a process of elimination. Just wanted to tell others the benefits of LDN for other auto-immune arthritic conditions. Thanks for spreading the word.