"LDN may well be the most therapeutic breakthrough in over 50 years. It provides a new method of medical treatment by mobilizing the natural defenses of one's own immune system." ~ David Gluck
I have previously posted at least twice about my trials with a little-known medication called low-dose naltrexone, LDN for short. You can read those previous entries HERE and HERE.
However I have decided that it is worthy of another post, because I am about three weeks into my third trial with it and I have recently learned more about the medication.
Naltrexone is a prescription medication that has historically been used in larger doses to treat alcohol dependence and opioid addictions. Since the 1980's, some doctors have discovered that it can be used in smaller doses, hence the name LOW-dose naltrexone, to successfully treat some chronic illnesses, specifically autoimmune diseases, cancer, HIV, fibromyalgia, etc. It accomplishes this by regulating cell growth and slowing down cell proliferation. For autoimmune diseases, this cell regulation results in the immune system being reset.
LDN, at doses of 1.5-4.5mg per day, works by blocking the opioid receptors in your body for approximately four hours. The body is tricked into thinking it is not producing endorphins, specifically those called Opioid Growth Factor (OGF). The body then compensates for this by increasing production of these opioids and their receptors, producing a rebound effect.
LDN was first introduced to me in early 2013 by my integrative medicine practitioner. It has successfully been used to treat Multiple Sclerosis and Crohn's Disease in some individuals. My practitioner thought that it may be of use in Sjögren's syndrome. The problem is not many people have heard of it and there haven't been many studies done on its positive effects; although there were a few studies done with Multiple Sclerosis and Crohn's patients which showed its benefits. LDN is a very inexpensive drug and is already available as a generic preparation, so of course research studies do not get big funding from the pharmaceutical companies and the drug remains underutilized. There are some grass roots groups that have been trying to get the word out there and that is the primary reason why I decided to do another blog entry about it.
So you are probably wondering why I am trying this medication for the third time. I have actually had some good success with it, however the side effect of insomnia has been enough of a problem that it has caused me to go off of it during one of the trials. Also, the last time I was on it, I was admitted into the hospital and put on narcotic pain medication for an issue that had nothing to do with the LDN. You CANNOT take LDN while you are taking narcotic pain medications. The only possible exception to this is Tramadol which I have been able to take, only on occasion, and I try to space it four hours apart from my LDN dose.
LDN is a compounded medication. I get mine compounded by Skip's Pharmacy in Boca Raton, Florida and it is shipped to my house. They also do a vegetarian capsule which is dairy-free. The owner, Skip Lenz, is a pharmacist who is considered an expert on the use of LDN and he is a very valuable resource. This is not a medication that all pharmacies know how to prepare in terms of fillers, etc. so do your homework on this. And do NOT get it in a slow-release form. The total cost, with shipping, runs me somewhere between $22-$28/month. Insurance does not cover it, but that is cheaper than many of my insurance co-pays.
Ideally, you should work with your doctor in regards to using LDN. But, if you want to try LDN and cannot get a doctor to prescribe it for you, you may contact Crystal Nason by email at this address: LDNDrListRequest@aol.com. Put LDN Prescribing Doctor in the subject line and tell her where you live. She has an extensive list of doctors who prescribe LDN and I have heard she is an excellent resource for this.
I am seeing a different integrative medicine practitioner now and we talked about trying the LDN again, but this time, by starting at a much lower dose and slowly increasing it to see if I can tolerate it. The previous two times, I started at 3mg I believe. This time around, I am starting at 1 mg. I am probably going to stick with that dose for another month or so. It has affected my sleep some already, but not to the extent it did before. Oftentimes the insomnia improves over time. Typically, people say that LDN should be taking between 9pm-3am so that it works on the endorphin receptors during their peak time, which is between 2-4am. This is probably the most debated topic regarding LDN...when to take it. Other experts on the topic feel that because of the mechanism of how it works, you can take it at any time of day. Because I have already started with some insomnia (I fall asleep fine, but wake up around 1 am for a while and feel wired), I am trying it in the morning. It's too soon to tell yet if that is helping my sleep as I have had some other issues affecting my sleep this week.
What I have noticed just from being on this small dose is that my typical low level anxiety that I get from time to time is gone and in general, I feel more on an even keel. My energy level has also improved a little during the day. In the past, when on higher doses, I have seen a dramatic improvement in my pain levels and energy. And that is exactly why I am working so hard to get LDN to work for me.
The thing about LDN is this: besides the insomnia and vivid dreams, there is minimal risk and side effects to taking it. OK, you have to deal with the narcotics issue but besides that, it is a relatively convenient medication to take. No life-altering side effects like all the immunosuppressants that get thrown at us; osteoporosis, diabetes, cataracts, cancer, the list goes on and on. If you are being treated for a thyroid disorder, you need to more closely monitor your thyroid levels because as LDN regulates your immune system, your TSH levels can fluctuate and you may need a thyroid medication adjustment. And finally, as we know, not all medications work successfully for everybody.
Because the research is limited and its not well known as a treatment for autoimmune illness in traditional western medicine, there are a lot of unknowns about the medication at this low dose, the dose timing thing being a perfect example. So if you decide to try it, you are going to have to listen to your body, do your research, and find what dose and timing works best for your body and particular illness. Don't give up on it. There are plenty of non-prescription sleep supplements to help with the insomnia if you should need it and I believe that LDN is well worth the effort. While I don't think it is a miracle cure, I do think it can be an important component of the treatment plan.