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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Mast Cell Activation: A one person successful treatment

Kati

Patient in training
Messages
5,497
Hi everyone, I wanted to share the story of this Canadian woman who has been a ME patient for a few years, failed the 2 days CPET, was also diagnosed with MCAS, and found great improvement with Xolair (Omalizumab). Her immunologist/Allergist managed coverage of the drug by means of skin reactions. (She gave me permission to share this)

She is now able to get out and enjoy life with her partner and has been able to reintroduce certain food she had reactions to. She says she tolerates the med ok but is tired the day the drug is injected, and has a headache.

She says that not everyone with MCAS has success with this drug but is obviously very thankful to have been able to try it. I do not know much more than this, like how long she needs to stay on it or how much it costs, or else.

Disclaimer:

I am passing this on because I know of the struggle those of you with MCAS have.
I do not have any interests or stocks in the company that produces Xolair.
I have not researched the drug and it is up to each patient to research the drug, side effect and discuss with their own doctors to see if they would be good candidate to try it. Perhaps researching in MCAS patient forums could be useful. Like any other monoclonal antibodies (the class of drug Xolair belongs to) it is advisable to be cared for by a specialist who is experienced in prescribing and managing this medication. Do not attempt this by yourself.

Best wishes to everyone.