In previous posts, I made some references to low dose naltrexone (LDN) and talked about the possibility of trying it as an alternative treatment for Crohn's/autoimmune disease. I thought now may be a good time to talk a little bit more about LDN and my experiences with it. I've only been taking it for 2 weeks, so I don't have much to say about its effectiveness. However, my joint pain was signficantly reduced after the first week of taking it and the pain seems to have disappeared at this point, so that is definitely positive :) I'm tentatively hopeful that it may stay gone for good this time, as other Crohn's disease LDN-users often report. At a full strength dose of 50mg, naltrexone is an opiate antagonist used in the treatment of alcohol and drug dependence. It was originally approved by the FDA in 1984 for the treatment of opioid addiction (heroin/opioid narcotics), but is more commonly used today in the treatment of alcoholism. Naltrexone acts by blocking the opioid receptors in the brain to reduce cravings and inhibit the effects of the drugs or alcohol.
Low dose naltrexone (LDN) refers to the off-label use of naltrexone at low doses to treat diseases and conditions not related to substance abuse or dependency. In 1985, Bernard Bihari, MD found that when naltrexone was taken at a low dose, it enhanced patients' immune response to HIV infection. Within the next several years, Dr. Bihari found that LDN also benefited his patients with cancer, as well as certain types of autoimmune disease. In 2007, Jill Smith, MD conducted the first published clinical trial using LDN to treat Crohn's disease. The study had very promising results with 67% of the study participants going into remission and 89% experiencing a decrease in symptoms (see this for the full article). Since the first study published in 2007, there have been a few other studies examining the efficacy of LDN in treating HIV/AIDS, multiple sclerosis, fibromyalgia, and Crohn's disease (2 other studies conducted Dr. Smith).
LDN is believed to work by briefly blocking the opioid receptors, which leads the body to increase endorphin production. The endorphins play a central role in regulating the immune system. Although many more clinical trials are needed, LDN may be helpful in the treatment of a wide variety of diseases that are related to immune system function.
At the low doses that are used in the treatment of autoimmune disease (typically 1.5 - 4.5mg), LDN has very minimal side effects. The only reported side effects are insomnia or difficulty staying asleep during the first few weeks of treatment. These side effects will usually resolve after a few weeks of taking LDN. Because endorphin production occurs at the highest rate in the pre-dawn hours, LDN should be taken between 9pm - 12am.
With early clinical trials that show positive results in the treatment of Crohn's disease, the long safety record of the drug used at much higher doses (naltrexone has been on the market since 1984!!!), and very minimal side effects, you would think that doctors would be jumping at the opportunity to prescribe LDN to treat Crohn's, especially since so many of the drugs used to treat Crohn's are toxic and have very serious side effects. Well, you would be very wrong. In my case, it proved to be very difficult to find a doctor to prescribe LDN. Briefly, I believe the lack of physician interest (and for some, downright refusal) in prescribing LDN includes a lack of education on the off-label uses of LDN, lack of willingness to do research into alternative treatments, and lack of clinical trial data that other drugs have to support their use. Unfortunately, it comes down to the fact that there isn't a lot of interest by the pharmaceutical industry in LDN. The drug has been on the market since 1984, it is a very cheap drug, and there isn't a lot of money to be had in marketing LDN for the treatment of autoimmune diseases. Not to mention that if it works to alleviate symptoms, the pharmaceutical industry doesn't make as much money off the other MUCH more expensive drugs. It's a sad, but unfortunate truth; health care is driven by profit, not necessarily doing what is best for the patient.
After I was diagnosed with Crohn's, I did a ton of research into alternative treatments because I wasn't willing to take the toxic medications that the physician was pushing on me. I stumbled upon LDN and discovered that there is a large community of individuals who are successfully using LDN to treat Crohn's and a variety of other autoimmune disorders. I found the research on the use of LDN specific to Crohn's and I presented this information to my GI physician and asked her to prescribe it for me. She refused to even look at the studies. She told me that although she was aware of the use of LDN in treating Crohn's, it wasn't a treatment that she prescribed, as it hadn't been approved by the FDA. As any physician is able to prescribe medications for off-label purposes, this was just an excuse for being unwilling to think outside of the box. I next approached my primary care physician. She had never heard of using LDN to treat autoimmune disease and she was also not willing to prescribe it. I was a little discouraged at that point, but I didn't give up. After doing some more reasearch on the Internet, I found a woman who maintains a list of physicians that are known to prescribe LDN. I contacted her and she sent me a list of physicians in my area. (If you are interested in LDN, please send me an email and I will provide you with this contact's information). All of the physicians on the list except one of them were neurologists, as LDN is often used to treat MS. The one physician that was a primary care physician was no longer accepting new patients. I contacted the physician's office and asked if there were other providers in the office that would prescribe LDN. A nurse practitioner agreed that she would consider it after seeing me for an initial consultation. Because of the rules of my managed care insurance, I had to switch primary care physicians in order to see this NP, which I did. After the initial consultation with the NP, she was willing to prescribe the LDN after consulting with the physician in the practice. By that point, I had been referred to the second GI doc who was questioning the Crohn's diagnosis and I did not feel comfortable being treated by him. To make a very long story short, I had to switch primary care physicians again and I wasn't able to get the prescription for LDN from the NP. Thankfully, there are other ways of obtaining LDN. There are physicians who will do telephone consultations for a prescription. There are also ways of ordering LDN through online pharmacies. Ultimately, I obtained a prescription of naltrexone 50mg and I compounded it myself into liquid of 1mg/ml.
There are different theories about the dosing of LDN. Because the studies on Crohn's and LDN used 4.5mg, many believe that is the most effective dose. Some others follow dosing protocols in which LDN treatment is started very low and slowly increased to find the optimal dosage. If symptoms of the disease worsen or the patient experiences headaches, fatigue, or other adverse symptoms, the dose is presumed to be too high and the last dose used (before the increase) is the optimal dose. I am following a dosing protocol in which I started at 1.5mg and I'm increasing it by 0.5mg every 2 weeks (to a maximum of 4.5mg). So far, I've had no difficulty sleeping. In fact, the LDN seems to put me right to sleep. As I mentioned, my joint pain is improved and I think the fatigue is slowly getting better. I've actually felt like getting my butt back into the gym again :) My GI symptoms were already under control due to my diet, but I do feel like the LDN is helping with these other extra-intestinal symptoms, which was my main purpose in using it. I've felt for many years that my immune system hasn't been functioning properly and I'm hopeful that LDN will help to regulate it back to normal. As I continue with the LDN, I will be sure to post periodic updates on my progress.