Mast Cell Activation Syndrome: What treatments help you?

Hi @rhawk314, I'd like to add my welcome and some info to add to the great info you've already received from @juy77 @frenchie333 @hsminc and others.

You may also be interested in this related discussion"
- Mast Cell Activation: https://connect.mayoclinic.org/discussion/mast-cell-activation/

Robert, you ask about Mayo Clinic and MCAS specialists at Mayo in Phoenix. Regardless of location Mayo Clinic doctors from several medical specialties work together to provide you with the best care possible. Your team may include specialists in allergic diseases, hematology, dermatology, gastroenterology, neurology, endocrinology and pathology. To submit an appointment request and ask questions about being seen at Mayo Clinic AZ, start by filling out the online form on this page http://mayocl.in/1mtmR63. Once submitted, a coordinator will arrange a phone interview to talk about your needs and whether Mayo is right for you.

@colleenyoung Hi, I have an appointment with an allergist at Mayo in AZ next week. Does Mayo still diagnose and treat MCAS? I’ve seen conflicting reports. I am traveling from Northern CA and hope to get some answers.

@h2ogirl, I'm glad you have an appointment at Mayo Clinic. Here is more information:
https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/care-at-mayo-clinic/mac-20352862

I have allergies and MCAS too (and I think MCS as well). Xolair has been an amazing drug for me, and guess what... I've been on it for 7 months, and I think I'm having side effects: very sore joints and FDE (Fixed Drug Eruption). I'm devastated because I am not willing to go back to how I was before. I was so sick, with too much time spent at the ER, labs, doctors' offices, prednisone, over and over again. I was covered with hives and had angioedema, asthma, and constant breathing issues. I know my doctor said we can try Dupixent, but it doesn't work as often in MCAS patients. Very few doctors will treat MCAS; I see a local allergist and an immunologist at Brigham & Women's in Boston, but neither will put MCAS on my chart, and the treatment is essentially the same. 4 Xyzal a day, Xolair monthly, Cromolyn, Singulair, Trellgy; I'm sure I'm missing something. Sadly, on top of all this, I have CCUS and will most likely get leukemia in the next some-odd year.

@pixiesusan Thank you so much for your comments. I’m so sorry. I can’t find anyone who will diagnose or treat MCAS in my area. I’m in Truckee, CA, near Reno. I am willing to drive to San Francisco, but can’t find any doctors.

@h2ogirl I was initially adamant about getting a diagnosis too, but gave up and ended up asking if they had anyone with MCAS in their practice. When I got a yes answer, I made an appointment. Both of the people I saw (local and the one in Boston) required a high tryptase for an MCAS diagnosis, which I don't have. And both told me they are treating me with the same drugs as they would if I had MCAS. It's a silly distinction but one of them told me that it's harder to get Xolair with Medicare (I'm older) with an MCAS diagnosis than with allergy/hives. So now I'm at the point where I don't care what they call it as long as I'm getting treated for it. I hope you find some help.

@h2ogirl I was initially adamant about getting a diagnosis too, but gave up and ended up asking if they had anyone with MCAS in their practice. When I got a yes answer, I made an appointment. Both of the people I saw (local and the one in Boston) required a high tryptase for an MCAS diagnosis, which I don't have. And both told me they are treating me with the same drugs as they would if I had MCAS. It's a silly distinction but one of them told me that it's harder to get Xolair with Medicare (I'm older) with an MCAS diagnosis than with allergy/hives. So now I'm at the point where I don't care what they call it as long as I'm getting treated for it. I hope you find some help.