Gingergrrl
Senior Member
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Am late to reply but for me, Ketotefin was the first med that improved my MCAS back in June 2015. I started with 2 mg and it was initially sedating but after a few days, the sedation wore off and never came back. I quickly increased to 2 mg 2x/day (4 mg total) and it was the miracle med that allowed me to slowly start eating food again. I've taken as high as 6 mg/day but only on rare occasions like when I was staying at a hotel and very reactive to everything (after a flood in our prior apt last summer).
Since starting IVIG, my MCAS has been in remission but Ketotefin is one of the few meds that I still take 2-4 mg per day and am afraid to mess with something that works so well. I used to take seven meds for MCAS, and now only taking four, and Ketotefin is one of them. It's possible I no longer need it but like I said, am too afraid to mess with something that is working! Hope this helps.
And @hixxy best wishes with the Xolair or whatever you decide to try next. Am sending positive vibes your way as a fellow dachshund lover...
Since starting IVIG, my MCAS has been in remission but Ketotefin is one of the few meds that I still take 2-4 mg per day and am afraid to mess with something that works so well. I used to take seven meds for MCAS, and now only taking four, and Ketotefin is one of them. It's possible I no longer need it but like I said, am too afraid to mess with something that is working! Hope this helps.
And @hixxy best wishes with the Xolair or whatever you decide to try next. Am sending positive vibes your way as a fellow dachshund lover...