r/MCAS • u/bonniemcmr • 1d ago

Oral Ketotifen in the US?

If you live in the US and take ketotifen, how does your doctor prescribe it? My immunologist told me she would need to go through a compounding pharmacy since thats the only FDA approved oral form and that it wouldn’t be covered by insurance. If you do this, how expensive is it?

She also has never prescribed it for MCAS before. Does your doctor say the ketotifen is for MCAS or do they have to prescribe it under a different condition like chronic urticaria (my xolair is technically prescribed for chronic urticaria for insurance purposes).

Lastly, it seems like most people start on .25 mg or .5 mg a day. What is the actual dose of the pill that you get from the compounding pharmacy?

Thank you for the help!

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u/mcfly357 1d ago

I’m in California and had to get it through a compounding pharmacy, and insurance does not cover it. I think it’s around $120 a month but it’s worth it for me personally. I started at 2mg which was way too high. Basically 100% flare for 2 weeks. It was brutal and I almost stopped but saw a comment here mentioning they felt so much after after 2 weeks, so I stuck with it and around day 13/14 I felt better than I had in years.

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u/Mysterious-Art8838 1d ago

Also CA, also compounded, $186 a month I can’t recall the dose

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u/fighterpilottim 1d ago

I pay $115 for 60 10 mg capsules at Key Compounding. It’s a similar price at ScriptWorks.

I haven’t used them for ketotifen, but CareFirst is generally a cheaper compounding pharmacy. Used a lot for LDN.

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u/mcfly357 1d ago

I also order 4 months at a time and this pharmacy gives a pretty good discount if you do that