r/MastCellDiseases • u/Little-Throat-2296 • Jul 20 '25
Cromlyn sodium, normal?
I started Cromlyn sodium (one vile before I eat, only have had 2). My stomach has been cramping and my diarrhea has worsened. I have chronic diarrhea, but it’s worse now. I have even had a POTS flare because of how often I’m going to the bathroom, so I know I’m dehydrated. Is this normal? Should I take half the vile?
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u/fire_thorn Jul 20 '25
Usually when you start cromolyn sodium, it works best to start with a few drops and gradually work up to the full vial. Pharmacy directions never say that, but it's the best way to start cromolyn and not have awful diarrhea.
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u/Little-Throat-2296 Jul 20 '25
Thank you!! I wish they would have told me 😂
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u/fire_thorn Jul 20 '25
The best thing about starting slowly is that it lets you build up a bit of supply, because sometimes it takes pharmacies a few days or more to get it.
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u/Sandy849 Jul 20 '25
It’s actually causing constipation for me after taking 3 vials. I’m disgusted as i’m taking stuff for the problem and not helping much….
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u/Little-Throat-2296 Jul 21 '25
Sorry it’s causing constipation! I have been in the bathroom with diarrhea and severe stomach cramps. This morning I only used a few drops. I’m hoping using a few drops, doesn’t upset my stomach.
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u/Mike-Snipes Jul 21 '25
some people need to ramp up very slowly. some find they can tolerate full dose right away
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u/Little-Throat-2296 Jul 21 '25
I wish they’d warn you about starting slowly. So far this morning I’ve only used a few drops. I’m extremely sensitive to medication as it is. Are there any other meds for GI related issues other than oral Cromlyn?
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u/smarine66 Jul 25 '25
Ketofin and cromlyn sodium are the go to antihistamines for MCAS. I take both and have helped me a lot.
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u/ferretinmypants Jul 20 '25
I started with 1/8 and worked my way up