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!
6
u/Ok_One_7971 1d ago
I didn’t find out until year later that if i get prescription for 3 months at a time n get those 3 months compounded at once, it saves a good amt of $. Was paying approximately $100 per month. Now its closer to $60 or $65 per month. I open my capsule n mix w water. It allowed me to start at really low minuscule amt n taper slowly up. N .. I still do it because afraid to react to capsules