Low Dose Naltrexone: Working your way to the right dose

July 21, 2022
10
min read

Needing medical care sucks, but for a long covid sufferer it often sucks in special, terrible ways that most people might not recognize. It’s not fun to break your arm, but at least doctors know how to handle it—they’ve long since made themselves familiar with the techniques and tools they need to pop you in a cast and send you on your way. 

The contrast between that tried-and-true type of medicine and the troubles you face in trying to find help for long covid would be incredibly hard to explain to someone who has never lived with a less-understood illness. Where they can pop into any doctor and get treatment, you face an uphill battle that potentially includes such joys as educating your doctor on a set of symptoms they know nothing about, or worse, that they might not believe exists at all.

Many of the people fighting this drawn-out battle to get care are finding their relief by gaining access to a treatment called low dose naltrexone (LDN). Naltrexone is a drug originally developed to fight an entirely different disease (drug addiction) but has since been used to lessen the symptoms of dozens of other diseases. 

LDN treatment has been used with significant success by people who suffer from ME/CFS and fibromyalgia to lessen pain and fatigue. It likely does this by raising the body’s production of endorphins and having a positive effect on the immune system. Drugs made specifically for long covid don’t exist, but LDN is arguably the next best thing; it’s helping a lot of people. 

The fight isn’t over once you’ve gotten a prescription. Finding the right dose is every bit as important, and for all but a really lucky few that means there’s still some homework left to do to get the kind of benefits everyone else takes for granted.

Titration: Finding the right dose

Low Dose Naltrexone is so named because it’s a prescription for a much, much lower dose than the original purposes of the drug would have called for (think 4.5mg a day as compared to 50mg). At the original dose, there are some scary symptoms: intense pain, serious allergic reactions, blisters, and other similarly wonderful-sounding side effects. Luckily, the worst of these are mostly restricted to that full-strength dose and don’t seem common at the low-dose levels, if they occur at all.

The side effects at a 4.5mg dose are much less intense and are usually restricted to significant digestive issues (like nausea, vomiting, and abdominal cramps), some minor issues related to sleep like intense dreams, or some allergy-like symptoms such as itchy skin. Those aren’t nearly as bad, but it’s not good when a treatment that was supposed to make you feel better instead makes you feel worse; it’s a lot to deal with when you’re already suffering. 

For some people these side effects just make the treatment a little worse; they feel better, but at a cost. Some others might get discouraged and quit. This is heartbreaking; dropping the treatment because of a failure to minimize the side effects represents the loss of a lot of time, research, and effort as well as any of the potential good LDN could have done. 

Enter titration, or the process of adjusting the dose of a medication upwards or downwards as you use it in search of the level where it does the most good. Titration helps in two ways. First, it gives your body time to adjust to the medication. Many people who start right away at the full 4.5mg dose report immediate discomfort of all sorts, ranging from headaches/muscle aches to nausea to various kinds of negative psychological effects. Slowly stepping up the dose gives you time to adjust, which for most people prevents enough of the negative effects that they can work their way up to a meaningful, helpful daily use.

The usual phrase the long covid community uses to describe the process is “low and slow”. They’ve found that starting at a low dose (For example, .5mg per day, which is 1% or less of the maximum dose used for opiate dependence) and increasing a milligram or half-milligram a week creates a gradual enough increase that they are able to get to the dose they want with minimal trouble. This might be frustrating, but it’s reliable; the extra time really does appear to help, and it’s the closest to a one-size-fits-all solution we have at the moment.

You can do better than “gut feel”

Imagine you want to figure out if drinking a lot of coffee one day makes you especially tired the next. There’s a basic way to gather data that gets you most of the way there; simply note how much coffee you drink and how you feel every day, and look for patterns. 

This works fine until you consider that there’s lots of things that make you feel tired. Too much or too little sleep, stress, exercise and other aspects of your diet might all factor in as well. It gets even harder once you realize that two hours of lost sleep often just hit harder some days than others; the only way to get around the uncertainty this kind of variability introduces is to gather more and more data over longer and longer periods of time.

Realistically, most people aren’t even going that far. Most people are working from a general guideline and doing the best they can based on their gut feeling and unreliable memory. It’s not as if this doesn’t work at all, but it’s not anything like what you’d think of as optimized. Even adding in manual note-keeping, you are going to miss important things. Going strictly off gut impressions is another step in the wrong direction and eliminates the potential to fine-tune.

LDN dosing faces similar challenges. Anyone trying LDN has a significant amount of complexity from the cycle of good and bad days from the illness alone. Once you start to work on the dozens of other factors that affect how you feel any given day, manual note-taking doesn’t cut it anymore. There are just too many factors for a normal person to keep track of them all. 

This is a situation where technology saves the day. Devices like the Oura ring passively keep track of a bunch of things that are hard to track yourself, like heart rate, sleep quality, body temperature, and detailed information about your activity. In addition to manual notes recording more subjective issues like your level of pain or fatigue, tools like these start to let you build up the critical mass of data you need to get a clearer picture of your day-to-day health.

On the other side of the problem are tools developed for self-experimentation that help organize and interpret that data. Eureka’s app, for instance, lets you run self-experiments that uncover links between factors like dose, sleep, diet, and stress. This lets you see what makes a difference and what doesn’t, and adjust accordingly.

Tools like these are a huge advantage in optimizing your treatments. For instance, consider that you might tolerate a particular daily dose of LDN better when split up into smaller doses throughout the day, or that you might be making other changes beyond LDN at the same time you are adjusting your dose. 

There’s probably someone out there who can keep all of those different threads straight in their head, but for everyone else this kind of help is a near necessity. 

The more we learn, the better everyone does

If you are reading this article a little frustrated about how vague our language is, we share your pain. We’d love to have magic-bullet instructions on how to get better, but in many cases, that data just doesn’t exist. Science is just now starting to make progress on long covid treatments, and it’s out-and-out distressing how much we still just don’t know. This is especially true since this means that there are a lot of people suffering in very real ways that are just now starting to see the first glimmers of meaningful, helpful treatments.

We know people who worked their way up to a full 4.5mg daily dose and found they felt better at a lower dose, and people who got their maximum benefit from the maximum dose. We’ve talked to people who did better with a single dose in the morning and people who felt better with more doses split up throughout the day. 

There’s a ton of variability here, and that means we have opportunities to help not only by helping individuals find what works for them, but eventually by gathering enough information to find the best starting points and shortcuts to help cut down the time people spend in this process overall.  

If you are working through these kinds of issues and experimenting with these kinds of treatments, we want to hear from you. We want to know what you are trying, how you are working to try it even better, and what kind of results you are seeing. On our side, we will be working to learn as much as possible from each conversation. We will do everything we can to help people run experiments that uncover evidence not only for themselves but also pave the way for others in the future.

We eventually hope our app helps people optimize their health in a lot of different ways, but we started with long covid because it’s a situation where collecting little pieces of knowledge from a lot of sources can do a huge amount to help people who—both now and in the future—are looking for the best ways to get better.

We look forward to talking with you about it and finding the best ways to move our knowledge forward together. 

Our app is up and running, and we are here to serve. To sign up and get started building out your first experiments, go here:

https://eurekahealth.typeform.com/to/xZiCtfJM

And feel free to contact me at zain@eurekahealth.com if you need advice, help, or insightI am happy to help!

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