MCAS Ketotifen

[RoseStar]

I suffered with long Covid after catching it at 38 weeks pregnant and was later diagnosed with MCAS and put on Ketotifen. I’ve been on it a year and struggle to know if it helps or not as I was diagnosed with PoTS, Hypermobility and underactive thyroid during that time. The latter makes me feel rotten while trying to get the right dose (endless battle). I have tried to come off Ketotifen as I question if I do actually have MCAS and hate being on unnecessary drugs but I am now breaking out in itchy rashes (a symptom I never had before!!) Has anyone else experienced this trying to come off Ketotifen?!

[Marcilhac]

Hi

I have Systemic Mastocytosis ( confirmed by genetic test and biopsy in the past year) and also have a hypermobility and POTS diagnosis since 2017. I was prescribed antihystamine 1 and 2 (fexofenidine and famotidine) and ketotifen. I stopped taking ketotifen very quickly as it made me feel anxious and slightly crazy. The antihystamine are free of side effects and certainly help. Your rash could be the Mast cells not the withdrawal from ketotifen.

The Masto consultant I see recommends sodium chromoglicate if the antihystamine doesn’t prove to be enough and doesn’t use ketotifen.

My cardiologist also recommended measures to stabilize blood pressure ( salt , drinking more and wearing compression socks ) to counteract the effect mast cells had on my POTs and nighttime sweating. It helped.

Hope you find what works for you.