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Cromolyn (MCAS drug)

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Posted 11/1/2019 1:05 PM (GMT 0)
Hello, all.

I noticed the posts here about cromolyn sodium are relatively old, so with the recent attention to MCAS, I thought perhaps more people would have experiences with cromolyn sodium to share, since it's a mast cell stabilizer. Any side effects? Any advice?

My LLMD diagnosed me with MCAS clinically after I realized my beloved kombucha and miso were giving me terrible brain fog, slight drunkenness feelings, and slight belly rumbling. Cutting out high-histamine foods and taking quercetin have meant that I have not experienced these symptoms again. But I never had any testing done.

Currently, I'm struggling with severe abdominal pain an hour after I eat, and the only abnormality on blood work is sky-high eosinophils. People who can't take steroids (me) have used cromolyn sodium to treat eosinophilic gastroenteritis, irritable bowel disease, food allergies, and (obviously) mast cell activation issues. It seems like a good thing to try while I await appointments with specialists and imaging.

But I react to everything new I ingest. (I'm aware this can be due to MCAS, ironically.) I'm the person who has all those rare side effects listed on prescription drug paperwork, and I have not taken a drug in years as a result. Basically please help me chill about this and try something that might help!
Posted 11/1/2019 10:04 PM (GMT 0)
One thing I heard is that you want to start it slowly. It's a liquid, so you can titrate. If you have trouble with eating, it might be a good one for you since it seems to mostly affect mast cells in the gut.

I actually just filled my order for it, I haven't tried it yet. While I undergo some of these treatments like disulfiram (currently taking a break) I've been integrating a pretty hefty MCAS protocol in the hopes of curtailing some of the cytokine storms from die-off.
Posted 11/2/2019 1:18 AM (GMT 0)
I took it and it made me worse. I read it can temporarily worsen your symptoms but I've already had more than enough sh** from MCAS I didn't want to "wait and see" if it started helping. I took it before meals for about a week.
Posted 11/2/2019 1:31 AM (GMT 0)
Thanks for the feedback!

jb1994, did MCAS symptoms get worse for you, or did side effects from cromolyn make you feel worse? I definitely agree with not continuing with something that makes you feel worse on top of everything else!
Posted 11/2/2019 3:29 AM (GMT 0)
I'm on it, been taking it for nearly a year with no issues. Can't say it does me any huge benefit but it doesn't have any negative side effects
Posted 11/2/2019 5:44 PM (GMT 0)
Started it today. I have not taken any kind of drug in years because five of the last six drugs I tried produced allergic reactions, so I was a bit of a nervous wreck beforehand. Starting at half-doses, planning on a full dose later. Feeling a little weird but I suppose that's to be expected for something that interacts with mast cells.

And Aerose91, you've been on it for a year? Mine is $50 for a two-day supply, so I guess there must be a cheaper version!
Posted 11/3/2019 1:35 AM (GMT 0)
saraeli- I can't say, all I know is on it I got even worse symptoms of MCAS than I would have had I not taken it. It made my MCAS worse.
Posted 11/3/2019 2:37 AM (GMT 0)
Wow that's a ton. Luckily my insurance covers it. I take 10mL, three times a day
Posted 12/30/2019 1:00 AM (GMT 0)
sara,

Hey! How are you doing with the Cromolyn sodium? Do you take it before meals and at bedtime?

My doc Rx this 2 weeks ago. It’s still in the bag. I was waiting until the right time to start. I hate the idea of another Rx but she made it sound harmless.

I’m supposed to take it 30 minutes before meals and at bedtime. Can’t figure out how to do that, as I usually take Zeobind (binder) 30 minutes before supper. I also got a Rx for pure Cholestyramine, which would be dosed exactly as the cromolyn. Obviously I can’t take them together.
Posted 12/30/2019 1:17 AM (GMT 0)
Ugh, yeah, I don't know how you should time those. Seems like it will be a full-time job to keep track of binders, cromolyn sodium, and all the other supplements!

I've been tapering off of it, actually. I want to know whether it helped my symptoms resolve or if it was a coincidence. I started at a half-dose, 4x/day, and never increased from there. At first it increased some MCAS symptoms slightly. Now, tapering off, the withdrawal is making me oddly thirsty. I think it is relatively harmless.
Posted 12/31/2019 12:53 AM (GMT 0)
Will be interesting to see if the cromolyn was helping. What symptoms got better?
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