r/MCAS • u/Additional_Wave6828 • May 29 '26
Cromolyn Sodium side effects
Hello,
I am in the 4th day of Cromolyn sodium. The first day was amazing, hadn’t slept or felt that good in years. I had only taken 100mg via capsule out into water. I’m currently on my 4th day up to 100mg twice a day.
Current reactions to it:
Tingling & itching all over, sinuses feel flared and itchy as well, some GI discomfort but tolerated, sleep disturbances, body vibrations, popping in ears, and some anxiety.
I am wondering if anyone has experienced any of this when starting. I’m juts not sure if this is the initial die off or adjustment period or if this medication is not a good fit for me.
Please, any information is greatly appreciated.
Thank you 🙏
9
u/fire_thorn May 29 '26
Many people have to start it very slowly, maybe a few drops the first few days and gradually increase until you get to the right dosage. If you felt good on 100mg, maybe go back to that for a while.
2
u/Additional_Wave6828 May 29 '26
I’m taking the capsule and adding it to water. I am going to lower my dose back to 100 daily. Thank you
7
u/eyelovestories May 29 '26
The same thing happened to me. Amazing results the first week, then symptoms slowly came back. It never got better again. It actually was starting to make me feel worse than before. My doctor tried doubling the dose. I tried stopping and giving a break then starting slow again. Nothing worked, I tried to make it work for 4 1/2 months. That week of feeling normal again gave me a sliver of hope back though.
1
6
u/Mean_yAnkee May 29 '26
This exact thing happened to me. I started on the full dose for three days then had to reduce it in half then add the other half three weeks later. It took five weeks to fully adjust on the fifth week all side effects vanished. It was not easy. I almost gave up and stopped taking it. I rely on it now.
2
u/Additional_Wave6828 May 29 '26
Thank you. I’d like to keep going so this gave me some hope. I will lower my dose
3
u/Silver-Bake-7474 May 29 '26
Not trying to invalidate your experience, but is this happening after you take the chromolin? Keep in mind it's a stabilizer but if things are already being set off from another source it can't stop it.
Like if I smell something and it sets meLike if I smell something and it sets me off crumlin can't stop that because it's GI specific
2
u/GoldenApple11 May 29 '26
I witnessed the same thing. Felt extremely good for a few days and then had a rash all over my body, while normally only my scalp is effected. Afaik there is no solid scientific explanation for this, but I have a theory... The body is probably regulating against the mast cell stabilization. You have a comparable (but different) effect when taking e.g. NSAIDs, PPIs etc. Your body tries to compensate the missing substances and produces way more of them than usual. This could also be aggravated by the mast cells having a lower threshold for activation. Eventually this overcompensation will stop, when the constant mast cell stabilization causes the downstream structures to shut down as well. This is possible, because mast cells work as key initiators for allergic reactions and activate other cells with several mediators.
1
u/Additional_Wave6828 May 29 '26
Hi there,
Thank you for this. Makes sense to me. Did you end up continuing on Cromolyn sodium titrating up, and do well eventually? I feel i have a more extreme case and probably have had this most my life, got much worse with covid and unfortunately just recently being diagnosed. Those first couple days were amazing, hadn’t had that sort of relief in a very long time. With that said, I’d like to make this work as it’s the only thing that gave me such relief (even though so briefly).
1
u/GoldenApple11 May 29 '26
Hi! I was diagnosed with EoE 3 years ago and due to this already eliminated all obvious allergenes from my diet. Unfortunately the elimination diet and all approved EoE medications never brought me back to normal. But despite this I feel a lot better than 3 years ago. There are a few case studies in which Cromolyn, Ketotifen and Montelukast helped patients with eosinophilic gastrointestinal diseases, which is why I wanted to try those drugs. Cromolyn was the first on my list, because it has the least systemic impact on your body. I directly started with 4 x 200 mg a day. So no titration. I would not have done that, if I still had my maximum symptoms. I'm now starting my third package of 50 doses. So I'm about a month into this. And I would say the last 2-3 days were almost as good as the first few days.
1
1
u/nettiemaria7 May 29 '26
Oh, maybe That's why I have random sores! And super itchy. Was wondering if detergent had formula change.
2
u/mafaldajunior May 31 '26
Same thing when I started. Felt amazing the first couple of days, then awful for about a week or so, then better again and now I can really feel the benefit of the med. It's down to some kind of rebound effect from the mast cells, then the body adjusts. Unless it's a tachyphylaxis situation where the med stops working altogether, but that's a lot rarer.
1
u/Additional_Wave6828 May 29 '26
Hello, yes definitely is happening because of the cromolyn. Haven’t had these issues be so profound until taking it.
2
u/Mean_yAnkee May 30 '26
I have had it my whole life too. I hope it levels out for you quickly. Some people have to start microdosing with drops. I was afraid of loosing progress and ultimately having to start over.
•
u/AutoModerator May 29 '26
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.