Cromolyn as a mast cell inhibitor? [TWITTER] June 2022

godlovesatrier

godlovesatrier

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https://twitter.com/i/web/status/1540267791781175297

https://twitter.com/i/web/status/1540267797036539905

https://twitter.com/i/web/status/1540267800614281217

https://twitter.com/i/web/status/1540267802560430081

https://twitter.com/i/web/status/1540267806905847808

https://twitter.com/organichemusic/status/1540267808780591107

So not new as such a few threads exist on PR, but seemingly quite hard stuff to find. But apparently in america you can get it over the counter. @Gingergrrl have you ever tried this?

Would be good to know if anyone has given this a go and whether it worked. According to the pharmacist on twitter, who's pretty knowledgeable having grilled her on a few other things in the past nasal spray takes 2-3 weeks to work.

I'd like to get my hands on some, will post back if I can find it in the UK.

I am interested in the microglial theory because it slots into another article on Cort's blog that he posted today I think:

https://www.healthrising.org/blog/2022/06/23/neuroglial-hypothesis-chronic-fatigue-syndrome/

I think I might have MCAS but I also think I may have microglial activation, as I do not have pots and my dysautonomia symptoms don't seem normal - I only get severely dizzy with viral infections where I can feel swelling inside my brain.
 
H

hapl808

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I thought the point of cromolyn was generally that it worked in the gut so was good for food related mast cell reactions? I've tried it numerous times and since I eat very carefully, I'm not sure on the benefit.

Also for me cromolyn was prescription - not sure if there's an OTC way to get it.
 
katabasis

katabasis

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As far as I understand it, cromolyn isn't exactly a 'new' mast cell inhibitor - it's been used for a long time for treating asthma, and is also a mainstay of MCAS treatment, along with ketotifen. For a lot of people, ketotifen is actually preferred because cromolyn has a very short half-life, and it can be difficult to dose it consistently enough to ensure it has a therapeutic effect.

I've taken ketotifen for around a year now, and my N=1 is that it hasn't really helped my CFS. I was only ever a 'suspected MCAS' case so it's possible that mast cells aren't a major contributor to my CFS pathophysiology. I am still taking ketotifen because I have mild allergies, and randomly get hives for no reason I can trace, and it prevents both of those with few side effects. There's probably a subset of CFS sufferers, probably with major overlaps with MCAS, that will see a major benefit from ketotifen and presumably other mast cell stabilizers.

Also, it's worth mentioning there are a number of supplements which have mast cell stabilizing properties that might be worth a try if you cannot get a prescription for cromolyn or ketotifen. Quercetin is the one that comes to mind as being a good first resort.
 
godlovesatrier

godlovesatrier

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Agreed ketotifen is used a lot. I saw a post by @Learner1 where she said that ketotifen no longer makes her sleepy. Sleepiness might be due to a intestinal barrier leakiness issue.

So that was interesting. I still take it but it does make me a bit drowsy. Better than famotidine tbh even if mode of action is different.
 
Gingergrrl

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godlovesatrier said:
So not new as such a few threads exist on PR, but seemingly quite hard stuff to find. But apparently in america you can get it over the counter. @Gingergrrl have you ever tried this?
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I tried Cromolyn (in 2015) in three different forms. The first was Gastrocrom which was a liquid that you drink about 30 min before eating to try to prevent the allergic reaction to food. I went up to a very high dose (w/my doctor) but it never helped my allergic reactions and caused severe GI upset to the point that it became intolerable. I also tried (in 2015), Cromolyn in nebulizer form and nose spray but neither helped me whatsoever w/allergic reactions to food and I was not able to tolerate the side effects. The mast cell stabilizer that was literally a miracle for me as soon as I started it in 2015 was Ketotifen (and it also had no side effects for me). I have no idea why some do better with Cromolyn and others do better with Ketotifen.
 
valentinelynx

valentinelynx

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Nasalcrom is an OTC cromolyn nasal spray for treating nasal congestion.

Gastrocrom is the brand name version of the oral cromolyn that many people with MCAS use. The generic is just called cromolyn sulfate. It used to be expensive, but seems to be less so lately, and my insurance doesn't even require a prior authorization for it anymore.
 
EddieB

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valentinelynx said:
Nasalcrom is an OTC cromolyn nasal spray for treating nasal congestion.

Gastrocrom is the brand name version of the oral cromolyn that many people with MCAS use. The generic is just called cromolyn sulfate. It used to be expensive, but seems to be less so lately, and my insurance doesn't even require a prior authorization for it anymore.
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Yes, mine says cromylin sulfate on the box, hadn’t noticed that.
Is there any indication, that the generic is less effective or problematic than the original?
 
perchance dreamer

perchance dreamer

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I've just started Ketotifen as a mast cell stabilizer, having struck out with palmitoylethanolamide since it gave me insomnia. I have such a sensitive system that I'm on 1/4 MG of Ketotifen for now and will gradually increase.

I take it at night, and at first I had considerable next-day sedation. That is getting better now, and the Ketotifen has improved my sleep and lessened my back and neck pain, just from using it about 6 days.

Ketotifen increases slow-wave sleep and is supposed to suppress REM, but I've started remembering dreams again since being on it. I've read that some people gain weight on it because of increased appetite, but I haven't experienced that.

@Learner1, I'm glad to hear the sedative effect went away for you. The P.A. who prescribed mine and the pharmacist both told me that sedation usually lessens after awhile.
 
Learner1

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perchance dreamer said:
I've just started Ketotifen as a mast cell stabilizer, having struck out with palmitoylethanolamide since it gave me insomnia. I have such a sensitive system that I'm on 1/4 MG of Ketotifen for now and will gradually increase.

I take it at night, and at first I had considerable next-day sedation. That is getting better now, and the Ketotifen has improved my sleep and lessened my back and neck pain, just from using it about 6 days.

Ketotifen increases slow-wave sleep and is supposed to suppress REM, but I've started remembering dreams again since being on it. I've read that some people gain weight on it because of increased appetite, but I haven't experienced that.

@Learner1, I'm glad to hear the sedative effect went away for you. The P.A. who prescribed mine and the pharmacist both told me that sedation usually lessens after awhile.
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It has to do with your microbiome and how leaky your gut is. When I first tried it, years ago, I had a worse off gut and it was sedating. After a lot of gut work, it doesn't faze me
 
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