I was in a painful flare and starting to get desperate. Although mindfulness and meditation help, I felt like I couldn’t continue to push through. I cried. Hard. Sobbing and shaking. Which isn’t great when you’re already in pain. “This is too hard!”
My husband calmly said as he caressed my hair and massaged my temples, “You can do this. You are strong.”
The next day, I messaged my general practitioner. He’s been very supportive, albeit not very familiar with Fibromyalgia (as are most doctors). I decided to finally ask if he would prescribe me Low Dose Naltrexone (LDN). After reviewing my request and the link to research on the topic, he tentatively agreed to give me a month’s dose, stating that the research, while promising, was small. When I responded (via messages through MyHealth.Spectrum.org) thank you, I would like to try 2.0mg dose. He was a bit flabbergasted. “It’s only sold commercially in 50mg tablets. Do you know how to get that low of a dosage?”
This is when my online Fibromyalgia support team has been essential. Through my research and their input, I knew more about LDN than my doctor. I first learned of LDN from Donna, on her website Fedup With Fatigue. She gave me a bit of guidance on the dosing and titration that she followed because I knew the 4.5mg was a general ending goal, not a starting point. She also gave me a wonderful resource of knowledgeable people all finding their own way with taking LDN via the Facebook group: Low Dose Naltrexone for Chronic Illness and Infections. Brian Haviland, the administrator of the group, and several members have given me good information on how to proceed.
How to Adjust LDN Dosage Level
Due to LDN being commercially sold at 50mg tablets and even the low dose level many get compounded not being the level the individual can handle (like mine of 4.5mg), those who are in the know have developed an ingenious way to adjust dosage level.
Here’s what I’ve done (on guidance). I put 4 ounces of distilled water (ml is fine, too, but I live in the USA, so…😉) into a jar like the one shown above. I opened the 4.5mg capsule and poured the contents into the water. I, then, stirred to dissolve it, letting it sit a bit, covered in the refrigerator before taking it the next morning.
In the jar, at the bottom of the solution are white particles that don’t dissolve. These, I’ve found out, are the filler in the capsule. I asked the compounding pharmacists what type of filler was used in my capsules. He responded, “Avicel. It’s a filler with low allergy issues.” I’ll talk more about fillers in future posts in this series on LDN because this can be important.
To get the dosing amount you want, you have to do a bit of math. With 4 oz of water added to 4.5mg of LDN, if I take 1oz of the solution, I am getting 1.125mg (4.5/4). However, you could have 4 cups of water and drink 1 cup for the same 1.125mg. Make sense? (Thanks, hubby/math-guy for the lesson.)
My Initial Reaction
Three days in and it became apparent that I had too high of a dose at 1.125mg. This is definitely an individual thing, and one has to find their own path with the information given by others. Some can start with 4.5mg and have no side-effects from the get-go. Some, can start at 2mg and bump up every few days until they get to 4.5mg. (I will be explaining that while 4.5mg has been the treatment level most researched; it’s not the optimum level for all people.)
|Feeling terrible, I stayed in bed
for 3 1/2 days straight.
Cold packs on my head and the back
of the neck helped some.
And so, I was not going to fit into the “normal reactions” group (surprise, surprise). I was so dizzy, weak, nauseated, and a contraction type of headache at my temples and forehead. For 3 1/2 days, I was in bed. I threw up several times (which is difficult for me to do because I had the Nissen procedure of GERD that created a knot at the top of my stomach) and didn’t even want to drink water. I was ready to give up.
Luckily, I had the FB LDN group. They gave me encouragement and advice. I decided to press on.
|I really am appreciating
all the support and advice
I’ve gotten prior and during
this first couple of weeks.
Who is This?
|I’ve come to appreciate the
utter love this guy gives even
when it means I get woken by
a wet nose every morning.
|Getting out into nature
is my healing place,
especially now that we’re
warming up and getting
|The end of my raking the
it was sunny
which made me
even more joy-filled.
When researching more about why and how this works, I found an explanation that made sense for all these improvements. “The major mechanism of action of LDN involves blocking the body’s opioid/narcotic receptors for just a very few hours (rather than the all-day blockade caused by the 50mg dosage). Those are the same receptors used by the body’s endorphins. The body responds to this by greatly increasing its endorphin production, and those higher levels last all day — far after the blockade by LDN has ended. Endorphins turn out to be the major normalizer/upregulator of one’s immune system,” states David M. Gluck, MD in My Experience with Low Dose Naltrexone.
Why Isn’t this prescribed more readily?
If this Low Dose Naltrexone drug is so effective for Fibromyalgia (among many other issues), then why isn’t it approved by the FDA and paid for by health insurance? Why aren’t doctors more learned on the subject, and why aren’t they prescribing it more readily?
The answer, unfortunately, is money. Naltrexone has been around so long that it is considered generic. Because of this, Drug companies can’t make any money off of it. Dr. Gluck goes on to explain, “Because naltrexone has been a generic drug for many years now, no large pharmaceutical company will invest any money in the large research costs needed to gain FDA approval of these special new off-label uses of the medication. No one makes any significant money from sales of LDN! Nonetheless, there have been many small clinical studies of LDN performed at outstanding medical centers, all showing it to be safe and effective. Check my website for detailed information on the research [www.ldninfo.org/ldn_trials.htm].”
And so, I’m tentatively ecstatic to think that I may be able to get back my energy, clear-thinking, and have less pain. That I might be able to actually count on mind and body on a regular basis instead of it feeling like every moment is a roll of the dice.
I will be keeping you updated on my progress. I will not gloss it over. If it doesn’t work, I’ll let you know. Have you ever heard of LDN? If you take or have taken it, what was your experience? I’m especially wanting to hear from those who have taken it long-term, say 5 years+. I’d love to hear from you. I’m learning as I go.