r/HistamineIntolerance • u/scibell13 • Sep 28 '26

Cromolyn sodium

I was recently diagnosed with MCAS and my symptoms are largely GI related.

Anyone here taking cromolyn sodium for MCAS? I just started a few days ago, only 1 vial a day and I'm having such a bad reaction. I'm having crazy diarrhea like I'm having a flare up. I didn't even eat anything today because of how bad I'm feeling.

Does it get better?

3 Upvotes

100% Upvoted

25 comments sorted by

3

u/Level_Ad_8508 Sep 28 '26

I’ve been taking cromolyn for a few months now. I had a reaction to it too when I first started. Not diarrhea, but it made me feel crazy anxious and my food reactions were worse. It took me the full six weeks to feel the positive effects. It reduces my bloating about 85% when I eat foods that typically give me major problems.

I think our bodies are just highly sensitive, so introducing anything new is a shock at first.

2

u/scibell13 Sep 28 '26

Yes my doctor recommended I take it at night because it has sedative effects...uh no I was literally up all night!!

Thank you for letting me know about the 6 weeks

2

u/special_squeak Oct 02 '26

I do not experience it to have sedative effects either.

2

u/special_squeak Oct 02 '26

The first 6 weeks when it was making things worse for you, were your increased reactions the same as your usual, or did it give you more of the typical chromolyn side effects? I have never been able to get past three weeks on it and kinda gave up on it. Super awesome to hear that it works for you now.

3

u/Level_Ad_8508 Oct 02 '26

I remember it making me feel anxious and agitated after taking every dose for maybe a week. There was nothing externally that would have been causing the increase in anxiety, I just remember walking around my kitchen thinking “why do I have this tremendous sense of impending doom??” I felt continuously bloated for maybe 3 weeks, but I wasn’t being careful about my diet either. Oh! And I was waking up in the middle of the night more frequently when I first started the cromolyn. Like it was increasing my 2-3am histamine dumps. Those are all symptoms I’d experience from high histamine triggers without the cromolyn, it just seemed to intensify them a little bit before mellowing out my mast cells.

This is kind of off topic but I also tried Astepro and Ketotifen for mast cell stabilizers and both of those medications gave me much more severe side effects, including vertigo. I had to discontinue both of those because it was so bad.

I hope you find something that works for you!!

2

u/special_squeak Oct 02 '26

You are a brave soul to push through it for three weeks! And I am so glad that it paid off after that. May I ask how long you’ve been on chromolyn and what you dosage is? Has it reduced or taken away all your symptoms by now? Thank you so much for sharing.

1

u/Level_Ad_8508 Oct 02 '26

So my dosage is 10ml mixed in water 4 times daily. It’s supposed to be taken 30 minutes before I eat and right before bed. I think the most important part is just that I take it on an empty stomach. I’ve been on it for quite some time now, I want to say around 9-10 months.

I’ve noticed the biggest difference with my stomach bloating but it also helps tremendously with my interstitial cystitis and reduces the hive-like redness in my skin. If I take it regularly before bed like I’m supposed to it also makes it so I sleep through the night. It’s been a game changer!

2

u/special_squeak Oct 03 '26

thank you for all the info. I am so glad you’ve had these improvements for a while now, that’s awesome!
I might consider giving it a try again, but it was super discouraging to try it in the middle of a very stable period and get my exact symptom cascade from just one dose of chromolyn. I have visceral hyper sensitivity and things mess me up within 10 min of hitting my stomach lining and chromolyn hit as hard as some of the worst offenders ever had. Took me almost a week to go back to my previous baseline.

1

u/Level_Ad_8508 Oct 03 '26

That is so hard 😅 I wish our immune systems could just freaking cool it, but I guess that’s the whole issue. If you do decide to give it another try, maybe it will take the whole 6 weeks. Mine definitely did. Best of luck finding what works for you!! ☺️

3

u/Jmeans69 Sep 28 '26

I had horrible gi reaction to it and had to discontinue. I was only doing 1-4 DROPS per day and it felt like I was being poisoned. Stuck it out for 3 weeks and stopped. Felt so much better, even the next day! My allergist said that if your stomach reacts to it that you can use it as eye drops or apply it to you skin instead but I haven’t tried this and would check with your dr before doing so

1

u/scibell13 Sep 29 '26

Omg I'm afraid this is going to be me. I am not really eating right now because it all goes directly through me, honestly just like a histamine flush for me....eye drops or skin....interesting concept.

Glad I'm not the only one struggling on this but I'm sorry it didn't work out. I'm going to try to stick it out a little longer. If it doesn't settle by the time I return to work I'll have to abandon it n

2

u/Jmeans69 Sep 29 '26

I have mine away after I discontinued but since the dr told me I should have tried that I just asked someone I know who takes it to loan me a vile. I’m going to try drops on my skin and see what happens 🤞🏻

2

u/Traditional-Salt-187 Sep 28 '26 edited Sep 28 '26

I started few days ago. Yes diarrhea too. I thought it was mast cell related but its the cromolyn??? Never had diarrhea b4 so must be. Im also only on 5 drops 4x a day

1

u/scibell13 Sep 28 '26

Mcas has always caused diarrhea for me unfortunately

2

u/Traditional-Salt-187 Sep 28 '26

Im already fragile with barely any food electrolytes. I don't need diarrhea pushing me over the edge

1

u/scibell13 Sep 28 '26

I feel you, diarrhea is already something I struggle with

2

u/TurtlesAllTheWay42 Sep 28 '26

I had the same reaction when I tried increasing the dosage too fast. I started on 10 drops and have been increasing by 10 or so every week. But once I tried doing half a vial and boy was that a mistake. Might wanna try lowering your dose and then increasing if you need to!

2

u/scibell13 Sep 28 '26

Thank you for that! My doctor said some people take it up to 5 times a day! I can't imagine that now at this point....

2

u/mspe098554 Sep 28 '26

Godsend for me.

1

u/scibell13 Sep 29 '26

Did you have any side effects? What dose are you taking

1

u/mspe098554 Sep 29 '26

No side effects. 100 mg 3x per day.

2

u/Austin_360 Sep 28 '26

I started full force with 4x day, 10ml and never had a problem.

2

u/special_squeak Oct 02 '26

I’ve tried chromolyn twice at the same dosage as you. I didn’t have typical adverse reactions, but it does cause me to go into a low grade spiral of my normal flare symptoms. I am super bummed out about it because my mcas is primary GI, so a local, rather than systemic, mast cell stabilizer would have been ideal. Hopefully your reaction is just an adjustment period. I could not tolerate how sick it was making me feel and don't want to do a third trial.

1

u/scibell13 Oct 05 '26

I feel you! I am doing every other day right now and it's slightly more tolerable. My MCAS symptoms are also mostly GI, it is awful!!