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.”
- 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.
“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!
http://health.groups.yahoo.com/group/rheumatoidarthritis-lowdosenaltrexone (online chat group for LDN in treatment of RA – highly recommended)