return from immunologist

[trc1962]

Hi. Returned last night after seeing a immunologist at Virginia Mason in Seattle. She was kind and took lots of notes and asked questions. She did some allergy testing and everything was negative except mold. She said the flushing, itching and food sensitivities most likely was a form of MCAS (mast cell activation syndrome). She ordered the blood work for mastocytosis and it will be sent to the Mayo clinic. She doesn't think I have mastocytosis but overactive mast cells. Her treatment plan is 2 allegra in the morning, 2 zrytec in the evening and singular in the afternoon. She did not like my blood counts from 2 weeks ago so ran another cbc and hopes to figure out the bruising and tiredness. I am hopeful that can this treatment may help my skin and the flushing and be part of the answer to the issues. It was helpful that she was kind and she said there are many mast cell issues out there and they are real.

[Sharon]

I believe MCAD goes hand in hand with some AIs in many of us.
I pursued a diagnosis but they don't have the tests or knowledge where I live.
I'm also very sensitive to antihistamines- they really can dry you out!
Let us know if the treatment plan helps you!

[jazzlover]

I have MCAS too. It's not fun, but cromolyn sodium has really helped me. I'm afraid to try Singulair. I limit my H1 and H2 to one Zyrtec or Claritin per day and one Pepcid per day.

I try to get by on those. So far, so good.

[Sharon]

Hi Jazz, what were your experiences with oral Ketotifen (if you ever tried it)?