Benefits of Low Dose Naltrexone for MCAS

This post summarizes the benefits of Low Dose Naltrexone for MCAS.

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What is LDN?

Naltrexone is a drug that was developed to help people get off opioid drugs. Therapeutic dosages for naltrexone are around 50 mg or more, and are administered several times a day. In contrast, Low Dose Naltrexone (LDN) is a very small dose of Naltrexone, often between 0.1 to 14 mg, and it is used usually once per day.

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.

MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.

Check out this post on how to manage MCAS.

How does LDN work?

LDN, even in very small amounts, binds to the opioid receptors in the brain. When the body notices that there is a lack of opioids in the body, it responds by creating more endorphins. Endorphins are the feel-good chemicals your body naturally creates to deal with pain. When this wave of endorphins enters the bloodstream it helps to bring down inflammation, mediates pain, and helps you to feel good. It also has immune system-modulating effects.

Benefits of LDN

There are dozens of conditions that LDN helps, including:

• Inflammation
• Headaches and migraines
• POTS and MCAS
• Chronic pain, IBS, Histamine Intolerance, Insomnia
• Thyroid disorders
• Fibromyalgia, CSF/ME, and HIV
• Maintaining a healthy weight
• Autism
• SIBO
• Smoking cessation

and many more!

Side effects of LDN

Because the dose is so small, there are very few side effects and no severe side effects with LDN. Some people report headaches, dizziness, and vivid dreams.

LDN is typically dosed at bedtime, but for some people the vivid dreams are upsetting. If that is the case you can speak with your medical provider about switching to taking LDN in the morning rather than at night.

LDN isn’t a panacea for everyone, and it turns out my daughter has a gene variation that makes it so that she cannot tolerate LDN.

My dosage of low dose naltrexone for MCAS

For me, the 24 hours after my initial dose of LDN was magical. I slept better and had the best stool I had had in months. I started at a very low dose of 0.25 mg, and my provider expected that I could increase by 0.25 mg each week for five weeks. But I’m extremely sensitive, and the dosing of LDN is very individual. One patient can get great benefits from 0.1 mg, and another 14 mg. The “standard” dose is to start around 1.5 to 3 mg, and increase to around 7 mg.

But every time I tried to increase my dose I experienced extreme migraines. They were some of the wildest migraines of my life, affecting speech, cognition, and neurological function. At one point I was at the grocery store trying to pick out something from the frozen section, and my brain was seeing labels on the food packages that were complete jibberish … like “P – O – H” on a frozen chicken package. Luckily I had experienced these types of migraines in the past, and knew what was going.

On further research I found out that the lowest dose that works for you is the appropriate dose. There is no way for a medical provider to predict your ideal dose of LDN. So if they are suggesting that you “should” go up to X milligrams, take that with a grain of salt.

Fortunately, my provider knew I was really sensitive, and started me at a very very small dose of 0.25 mg. And I’m sticking with that dose for now, because it is working great!

LDN and MCAS

“So can LDN work for MCAS? Absolutely. And how does it work? Well, it’s thought that T-cell microparticles activate mast cells and we do know that LDN will reduce excessive T-cell dysfunction.  There may be opioid nerve receptors on the mast cell, although that’s not clear. So you you can see that there’s another way for LDN to help MCAS.” – source

The bucket theory

The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.

Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.

Know your typical symptom progression

Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.

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LDN is a compounded medication

LDN is not available through regular pharmacies, and so you need to get it through a compounding pharmacy. Compounding pharmacies are located all over the US, and they can create different formulations of medications that you can get from a standard pharmacy, like creams, transdermal patches, dissolving lozenges, liquids, and more. With LDN the compounding pharmacy takes the high dose medication and turns it into the low dose form, which is often capsules. Compounding pharmacies often work with functional medical providers and naturopathic doctors, so if you are looking for LDN you might need to find an appropriate provider who knows about it first.

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