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cartoonbean

Updated 4mo ago

Need advice on mast cell stabilizers for MCAS treatment

My doctor put me on ketotifen for my MCAS. I ended up having a rash that appeared on my hand that only went away when I ran out of the med. I tried taking it when it was refilled and again rash on hand. Anyone else have this problem? What mast cell stabilizers work for you?

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AI-generated answer based on the text from previous posts and comments

One person reported a significant improvement within two weeks of taking ketotifen for MCAS, including being able to reintroduce foods back into their diet safely. Another person mentioned taking xyza...See More

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MayEarsley

4mo

I have only used ketotifen for eye drops and somehow had a weird outbreak on my eye lid. I assumed it was a coincidence and waited until the outbreak cleared up. Then I tried again. Same thing happened. I stay away from ketotifen. I could imagine what it would do to me more concentrated. I tried Xolair treatments for a good while. It helped for like a year and a half but then stopped. My mast cell is a little more aggressive (it may actually be mastocytosis) so this is typical. Xolair I found was incredibly helpful and for most people, it can actually help long term. Worth looking into
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AlaskanZebra

2mo

I do fine with Ketotifen. Maybe your Dr could start with a lower dose and titrate up? A lot of people use Gastrochrom instead. It’s a liquid. ( or both)
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ChronicallyKiwi

1mo

I also had a reaction to that one at one point. I have a very complex combination of medication but am finally to a very stable point with my mcas. -mega dose antihistamines of course -cyproheptadine -Pepcid -singular -xolair -cellcept I’m also on Humira only for my rheumatoid arthritis but it seems to do something to combat my crazy mast cells. I don’t know if this exact answers your question but I hope it might help somehow!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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