A Continuous Oral Regimen of High-Dose Cromolyn Sodium Is Effective for Some ME/CFS Patients With MCAS, 2026, Christoforou, Rowe et al

[Wyva]

Full title: A Continuous Oral Regimen of High-Dose Cromolyn Sodium Is Effective for Some Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Patients With Mast Cell Activation Syndrome

Maritsa E. Christoforou • Linda C. van Campen • Frans C. Visser • Carlton K. Lee • Samantha L. Lemmon • Peter C. Rowe • Alba M. Azola

Abstract​

Our clinical experience in the last four years using oral cromolyn in patients with mast cell activation syndrome (MCAS) suggests that a continuous oral regimen of high-dose cromolyn may enhance compliance with the medication. The five patients described in this retrospective case series were given instructions to take oral cromolyn using a continuous dosing regimen, placing the entire day’s dose in an opaque bottle that is then filled with water, and sipping the solution throughout the day. If a conventional maximum dose of eight vials daily (800 mg) was tolerated but ineffective after a week, the patients were instructed to increase to 1600-2400 mg daily until reaching an optimal effect. We report that a cromolyn dose of 1600-2400 mg daily, administered using the continuous oral dosing regimen during the day, was effective in controlling signs and symptoms of mast cell activation. All five patients benefitted from a dose of cromolyn that is higher than usual and customary recommendations, but within the safety guidelines of the original Food and Drug Administration (FDA) application. The continuous oral regimen has some theoretical advantages over four discrete doses per day, though further study is needed.

Open access: https://www.cureus.com/articles/437...atients-with-mast-cell-activation-syndrome#!/

 

[Utsikt]

Did they test doing the same high daily doses but four times a day, or did they only test the high doses with water bottles? I suspect a lot of the motivation for adherence might have been based on the perceived benefit and not be related to the method. And some of them took quite a lot of other medications, so it’s not like they are not used to it.

Their first reference says this:

Pharmacokinetics
Cromolyn sodium is absorbed poorly via oral solution and has a delayed onset of action of 2 to 6 weeks after initiation. Similarly, less than 0.07% of administered cromolyn sodium is absorbed from ophthalmic solution or drops. The effect of cromolyn sodium on mast cells lasts approximately 6 hours following administration. The bioavailability of cromolyn sodium is 0.5% to 2%, with a half-life of 80 to 90 minutes. Cromolyn sodium is primarily excreted (98%) in the feces unabsorbed, with the remainder excreted in the urine.

I don’t understand how that works. How can the effect be both delayed and last 6 hours? Are they talking about two different things?

 

[forestglip]

Did they test doing the same high daily doses but four times a day, or did they only test the high doses with water bottles? I suspect a lot of the motivation for adherence might have been based on the perceived benefit and not be related to the method. And some of them took quite a lot of other medications, so it’s not like they are not used to it.

Could you say this in a different way? I'm having trouble following.

 

[wabi-sabi]

Cromolyn is usually dosed before meals on an empty stomach. For example, my doctor has me take it four times a day (before breakfast, lunch and dinner, and bedtime). It's a bit of a pain because I can't eat for an hour beforehand and a half hour after each dose.

In this dosing regimen, it sounds that people are constantly sipping on it all day and not taking it in discrete doses. It may be easy to take when you don't need to worry about meal timing.

 

[ScoutB]

I don’t understand how that works. How can the effect be both delayed and last 6 hours?

When I took Cromolyn sodium I saw this claim and was confused about it too. My best guess is that maybe they mean the effect builds up over time the more you use it. But I am also pretty suspicious of all the claims around Cromolyn's mechanism of action -- at least according to the wikipedia page we don't really know why it seems to help with Asthma. A bunch of different possibilities are suggested there.

Despite that, it did seem to reduce the really bad stomach aches I was having at the time.

 

[Utsikt]

Could you say this in a different way? I'm having trouble following.

Thanks for asking!

They say that this water bottle regiment increases adherence to the medication regiment.

I speculate that the increased adherence is because the participants perceive the higher doses to be beneficial, and not because the water bottle helps the medication work better or be better timed.

I suspect they would find the same rates of adherence if they gave them pills to take four times daily with the same total daily dosage, because the perceived benefit would be the same.

Or maybe spreading it even more to six or eight doses a day.

 

[forestglip]

Thanks for asking!

They say that this water bottle regiment increases adherence to the medication regiment.

I speculate that the increased adherence is because the participants perceive the higher doses to be beneficial, and not because the water bottle helps the medication work better or be better timed.

I suspect they would find the same rates of adherence if they gave them pills to take four times daily with the same total daily dosage, because the perceived benefit would be the same.

Or maybe spreading it even more to six or eight doses a day.

Oh ok, thank you.

I think I would personally be much more annoyed at having to take pills four or more times a day than just sipping from a water bottle throughout the day, which I do anyway.