Hello all! So without me even mentioning MCAS, a new allergist prescribed my cromolyn based on my symptoms and autoimmune urticaria. I pick it up tomorrow! On one hand I'm super excited, on the other, I'm super scared! I have had some pretty gnarly reactions to meds, even mast cell meds like vistoril and singulair. I've read some posts that say with cromolyn, you get worse before you get better. That kinda freaks me out. I'm just afraid of having anxiety like symptoms from it.
I'd love for anyone to weigh in on this drug. I know we're all different, but I'm still curious!
I'd really like to start out super small dose and work my way up. Can anyone help me with this? Does it come in 5 ml vials?
Has this been a big game changer for some of you?
Does it mostly just help with the GI problems, or does it help with all the problems? Joint pain?
Do sensitivities get less intense?
When I get triggered bad, I get stuck in a fight or flight feeling, I hate it. I also get that weird feeling like I'm in a dream and nothing is really real. I'm really hoping this helps with that! And the chronic brain fog! The other day I couldn't even remember Barak Obama's name! Scary.
Also....I know I already posted about this, but I thought I'd just put it out there in case it's of any help to anyone.
I have been using moisturizers (including eucerin) that were fragrance free, but had lanolin in them. It has taken about a year to figure out this trigger, but I finally did!   I even asked Dr. Afrin about it, and he said he has had many patients who trigger from lanolin.
I haven't been using it for about a week now, and I feel sooo much better. I was using the stuff everyday every night and had no idea it was making me sick!

** so I've done some more reading on the forum about cromolyn. Sounds like a tough drug to get on  . I would love any helpful tip or encouraging advice. I read a thread about it making someone feel very "off" and out of it, kind of like that feeling I talked about above that I'm trying to get rid of!

Brigitte,

Others here will know more than me.  But, I have recently restarted Chromolyn Sodium, and I know from past experience that you need to go slow and drink more water when you take the medication.   For me, the powder dissolves easily in warm water.    It can cause extra gassiness, and gut cramps.   Also, fatigue and a sore tongue.   Most people find, however, if they start with a lower dose (for me 100mg/day in a divided dose), and slowly work up to their target dose then the symptoms are tolerable and dissipate over time.   Also, it can take several weeks for the medication to reach its fully effectiveness for you, even if you start on a larger dose.

But others are more expert on these matters than me.   I'm just happy be back on Chomolyn again.   I think it helps keep me more stable.

Todd in Tenn.

P.S.  I could tell Gastrochrom was helping me, but I it was perhaps complicated by the "plastic" smell of the ampules.   So, I switched to the pure powder in small 100mg capsules.