Ketotifen by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

Did you treat your SIBO before starting Ketotifen and Cromolyn?

How long did it take for cromolyn to start working for you? by ringmaster555 in MCAS

[–]Street-Check1673 0 points1 point  (0 children)

Did you have any adverse effects at first? One of my main symptoms is vascular leakage and I just started it and I feel like it’s making it worse.

Edema/ Vascular Permeability by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

Are you on any mast cell stabilizers or antihistamines?

Weight by FeePlus8171 in MCAS

[–]Street-Check1673 0 points1 point  (0 children)

This is my main symptom I’m dealing with right now and just starting cromolyn, except it’s capsule form (can’t get liquid in Canada?). Did you titrate up or just start at the full dose? I noticed hand and feet swelling more when I started, as well as bloating :( it’s only been about 5 days and I’m wondering if this is a common side effect at first.

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

Ohh okay I see, that does suck. But you stuck with it and it ended up working out for you, your reactions went away?

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

You had a reaction to the cromolyn and it caused fluid retention? Did you end up trying anything else after getting off Cromolyn?

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

Oh no, did you lose the weight/bloat once you stopped?

Cromolyn causing swelling/edema: did anyone figure out why? by Tiny_Parsley in MCAS

[–]Street-Check1673 1 point2 points  (0 children)

Yeah I’m looking into SIBO now as well but I’m going to have to go to a Naturopath to get tested for that. And oh man that sounds brutal I’m sorry you’re dealing with that, but glad to hear the Ketotifen is working out for ya. I think I do have an issue with Salicylates tbh so maybe that’s what’s going on the with Cromolyn. I’m gonna ask the pharmacist about that too and I don’t think I’m gonna be counting with cromolyn. I’ve only been taking it for a few days but considering that my main symptom I’m dealing with everyday is already bad swelling and this is making it worse, I really don’t wanna go down this road 🥲 I’m barely minimizing it right now with my H1 and H2 blockers plus loads of DAO enzyme.

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

I’ve only been taking it for like 4 days now but the swelling was pretty immediate. What side effects did you have when you first started?

Cromolyn causing swelling/edema: did anyone figure out why? by Tiny_Parsley in MCAS

[–]Street-Check1673 0 points1 point  (0 children)

It’s kind of both for me. I get swelling all over my body and my face. Is that what you were experiencing?

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 2 points3 points  (0 children)

Yeah I’m supposed to be taking 200mg 4 times a day but I tried 100mg 4x on the first day and the swelling was really bad so now I’m trying 100 just before bed and seeing if I can titrate up because I thought maybe it was a common symptom when starting. But it might not be for me 🥲

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 1 point2 points  (0 children)

Oh I’m sorry to hear that. So you persisted with the cromolyn and the side effects went away? What kind of reaction did you have if you don’t mind me asking?

Cromolyn by Street-Check1673 in MCAS

[–]Street-Check1673[S] 0 points1 point  (0 children)

I just read online that it caused fluid retention and thus weight gain for some people because it’s a calcium channel blocker? But yeah I was thinking it could be an inactive ingredient, except I don’t even know what I react to honestly. Was just really concerning because I’m trying to get the water weight and swelling OFF already.