Mastocytosis and MCAS

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Mastocytosis or mast cell activation Syndrome? I usually just go with Mast cell activation disorder.

I was fist diagnosised with systemic mastocytoisis. A few years later and several medicines added to control my disease I saw a different doctor that was not certain of the first diagnosis. She wanted me to have a bone marrow biopsy to confirm. Three bone marrow biopsies were done, unfortunately they were "dry". So we were not able to confirm. I was told to reseldule for another one. I hesitiate because it will not change my treatment in any way. Also a smart woman told me. I could have it done and it could be positive for SM or I could have it done and it could be negative for SM and I could still have SM. So for now I go with mast cell disorder...that was not one of the options here!

I am on a low histamine, low salicylate and no dairy diet. I am on Cromolyn, Ketotifen, Singulair, Allegra, Zantac, Dexilant and prednisone daily. The foods I miss most...Pizza and Ice cream! The foods that have caused anaphylaxis...Pizza and Ice Cream. Funny how that works!

It has been a really rough 5 years. I have lost my job, my friends, my ablility to go where I want, when I want...but I have gained a new friends and an appriciation of the small things in life. I would not wish this disease on my worst enemy. It is unpredictable and controlling. It has knocked me down at the knees and at the same time made me stong.

Your story is so similar to my own and to many others I'm sure. Just a suggestion but you may want to keep your prednisone and Benadryl for periods when you are very unstable. Long term use of prednisone has its own challenges.

Food intolerances are the worst!!! Totally understand about the pizza. Tonight my hubby had a delicious thin crust pizza with lots of veggies and spicy olive oil. It was a beautiful sight.

Keep rolling girl. I love your attitude. You know...a MCAD researcher from told me that she believed that within my "useful" lifetime there would be an effective medicine to control my symptoms. Let's keep hoping ❤️

Posted 6 years ago by Liz

Thanks Liz! I am working at reducing my prednisone, I am down to just 4mg a day. I am going down slowly! :) Take care!

Pam

Posted 6 years ago by Pam H.

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