My Experience With Low Dose Naltrexone for AS
For many years now my approach to living well with ankylosing spondylitis has involved a healthy dose of curiosity and a willingness to try new things.
Strategies that work well for me are adopted into my routine and those that don’t get discarded along the way.
Discovering low-dose Naltrexone for ankylosing spondylitis
Around eight years ago I first came across people in forums who were using a medication called Low Dose Naltrexone to treat symptoms of autoimmune disease. I did a bit of searching online and was unable to find much information at all so, as we often do, I forgot all about it.
LDN came onto my radar again three years ago when I visited an integrative doctor as part of a wider strategy to improve my overall health. Over time I have discovered the more I can do to boost my general health and wellbeing, the less I experience the symptoms of AS. Along with helping me address some nutritional deficiencies, this particular doctor told me he had a number of patients having success using LDN to reduce painful inflammation.
How my doctor explained it to me
According to my doctor, Naltrexone as a drug was originally developed for use in addiction treatment. He explained it to me as an "opioid antagonizer" which means it blocks certain receptors or pathways in the body, thereby preventing drugs or alcohol from having the usual pleasurable or mind-altering affect.
My doctor told me that many of his patients who had tried the drug at the fractional dosage (termed Low Dose Naltrexone) were experiencing a reduction in a variety of symptoms, most commonly pain related to inflammation.
I was able to verify much of what he had told me when I later came across this article in the Journal of Clinical Rheumatology. As well as discussing the origins of Naltrexone, it describes the successful use at very low doses for people with chronic pain and inflammatory conditions. The advantages highlighted include the relatively low cost, very low incidence of side effects, and broad application for a variety of health conditions.1
Use of LDN is still termed off-label and considered experimental. Very little formal research has been conducted and as such no peer reviewed studies exist. There is, however, a large number of anecdotal reports from people successfully using LDN as a treatment, some for many years and with no serious side effects reported.2
I decided to try LDN for myself about 16 months ago
My integrative doctor was able to prescribe it for me and a compounding pharmacy made up my first dosage - a tiny 1.5mg. I very slowly worked my way up over three months until I reached the standard dose of 4.5mg which I am still on today.
Apart from a few headaches during the first month, the only effect I have experienced is a notable reduction in my baseline inflammation since that time. For the first time in about 10 years I went for a full year in 2021 without a flare or requiring any other prescription medication.
LDN is by no means the only strategy I use to manage my AS (I also find yoga, diet, supplements, hydration and mindset to be game changers) but I do believe it has provided me with another valuable tool for managing symptoms and feeling better. I see it as one of the moving pieces in the customized plan I've created for staying as well as I can with AS.
The LDN Research Trust is a non-profit group with a very informative website you can check out if you or your health provider would like to know more about Low Dose Naltrexone.
How much about your AS do you share with others?