The Honest Truth About Using Cromolyn Sodium for MCAS

This post discusses the pros and cons of using Cromolyn Sodium for MCAS. I had been resistant to trying Cromolyn Sodium for a few years because I knew it was expensive, and I wanted to try to heal my MCAS without prescription medications. But after months of declining symptoms, I decided to try it for the first time. After one dose I knew it was a game-changer. My constant heartburn evaporated, my hives cleared up, and my brain fog lifted. It wasn’t a straight-line improvement after that, but the benefits I saw immediately sold me on its potential.

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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.

Why use cromolyn sodium for MCAS?

Originally Cromolyn Sodium was prescribed as an asthma medication. But it has been used for mast cell disorders for some time. Patients with MCAS have often been prescribed antihistamines as the first treatment option. If that isn’t enough then Gastrocrome, or Cromolyn Sodium is often the second line of defense.

Cromolyn Sodium is a mast cell stabilizer, so it keeps mast cells from releasing their mediators. From what I’ve read, Cromolyn Sodium is primarily effective for gut-related MCAS symptoms, like gas, bloating, constipation, diarrhea, and stomach pain. However, in addition, it can also be helpful for itchy skin, hives, bone pain, and flushing. Cromolyn is also known to be anti-inflammatory.

Why not use Cromolyn Sodium for MCAS?

Cromolyn sodium is generally well tolerated, but: “The most frequently reported adverse reactions in patients with mastocytosis who received oral cromolyn sodium solution in clinical studies were headache, diarrhea, pruritus, nausea, myalgia, abdominal pain, rash, and irritability.” – source

So, one of the drawbacks of cromolyn sodium is that it can cause side effects that are similar to the actual symptoms of MCAS. That can make it hard to tell if you are seeing improvement from the drug.

Another drawback, or con, of taking Cromolyn Sodium, is that it takes time to get into your system and show benefits. While I experienced the best sleep in several years after the first dose of Cromolyn Sodium, it was an up-and-down ride to find the dosage I could tolerate. I needed to start at 1/8 of the suggested dosage once a day, and I gradually increased my dosage over several weeks to 1/4 of the standard dose.

I found that as soon as I started to increase Cromolyn Sodium dosing too quickly I would get my tell-tale neurological symptoms of crazy migraines, neuropathy, and sciatic pain. Paradoxically, those are my worst MCAS symptoms! So, it can take a while to get up to the full dosage of Cromolyn Sodium, but it can be well worth it!

Other drawbacks of using Cromolyn Sodium for MCAS

Cromolyn sodium can be a helpful drug to add as a daily medication when you first get MCAS, and if you experience a big symptom flare. Many functional providers do prescribe cromolyn sodium but advocate for shorter-term use. Skeptics point out that its usefulness wears off over time, and you require more and more of the medication to get the same results.

My case of using cromolyn sodium for MCAS

In my case, I started taking cromolyn sodium before I started SIBO treatment in 2023. I knew that I was already at the limits of coping with my mast cell symptoms. I was having daily reactions to everyday triggers, and I didn’t want to be reacting to the treatments that would ultimately make my MCAS better (with my SIBO under control the mast cells in my gut could calm down).

So I started Cromolyn Sodium to calm my mast cells so that they could more easily adjust to the stress of treating the SIBO infection. I found that Cromolyn Sodium was hugely helpful to stabilize my mast cells – so much so that I feel that I breezed through the SIBO treatment.

In my case, it was totally worth it to start Cromolyn Sodium to have the mast cell support I needed to get through the breath test for SIBO, which requires a prep of a limited diet, and the week of the Specific Carbohydrate Diet (SCD), which was severely limiting.

How much is cromolyn sodium used?

Cromolyn sodium is the 3rd most tried, and the 2nd most effective of mast cell activation syndrome treatments for respondents. – Source

40% of user say that Cromolyn Sodium works “Very Well,” and 48% of use says it works “Fairly Well.” It compares fairly similarly to Ketotifin Fumerate, which 41% of user say works “Very Well,” and 41% say works “Fairly Well.” – Source

Obesity, high cholesterol, and Cromolyn Sodium

Not long before I started Cromolyn Sodium I found out that my cholesterol had risen from about 150 to 240 over the course of the last year. I was alarmed at my cholesterol levels and started researching the MCAS-cholesterol relationship. What I found is that many people with MCAS also have incidences of obesity, hypertension, and high cholesterol. I learned about the “Cholesterol Paradox” with MCAS, which is that people with mast cell disorders have a higher prevalence of cardiovascular events. – Source

I had also gained over twenty pounds in the last year since my MCAS diagnosis. But I further learned that mast cells are heavily involved in obesity, hypertension, and atherosclerosis. – Source So, many mast cell patients have problems with high blood pressure, high cholesterol, and obesity. Luckily, I learned that Cromolyn Sodium has been shown to decrease obesity in MCAS patients. – Source

And better yet, Cromolyn sodium has also been shown to reduce cholesterol. – Source Specifically, “Treatment with cromolyn has been shown to block mast cell dependent LDL uptake by macrophages.” – Source

This news was enough to help me push through the initial discomfort of starting Cromolyn Sodium.

But a bonus I discovered, is that Cromolyn Sodium has been shown to help with liver disease too. – Source

And double-bonus – Cromolyn Sodium has been shown to help decrease thyroid cancers. – Source

Cromolyn sodium forms and dosing

Cromolyn sodium comes in powders, capsules, and liquid-filled ampules that are broken open and mixed with water. Cromolyn Sodium can also be compounded into myriad forms. Every form has its pros and cons. I have taken the ampules as well as a compounded suspension in olive oil. It is a bit of a hassle to mix the liquid in the ampules with water when you are tired or groggy first thing in the morning. Whereas, measuring the compounded olive oil into a tiny syringe can get tricky too when you are tired. I learned the hard way how sensitive I was to a tiny shift in dosage by experiencing one of the most bizarre and painful migraines of my life after taking a little bit too much Cromolyn Sodium.

Timing of administration

The package insert suggests taking Cromoly Sodium 30 minutes before eating. After talking with my pharmacist I also learned that you should take it at least 2 hours after eating or having medications/supplements because it can interfere with the absorption of some medications. Some of the worst heartburn of my entire life occurred after taking cromolyn sodium too close to a meal.

My current Cromolyn Sodium dosing schedule is:

5 a.m. (eat breakfast and take supplements/meds around 6 a.m.)

9:30 a.m. (eat lunch and take meds around 10:30 a.m.)

1:30 p.m. (eat a snack around 3:30 p.m.)

7:00 p.m. (after a 5 p.m. dinner, and before my bedtime meds at 8:30 p.m.)

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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What do you think?

Do you use Cromolyn Sodium? How does it work for you?