Mast Cell Activation Syndrome - And How to Have a Really Really Flexible Life

I have Mast Cell Activation Syndrome (MCAS). This means that my mast cells, which are a function of the immune system, get way over excited and produce too much of the many types of hormones they can produce. Unlike allergy triggers which you can often identify through testing and the process of elimination, mast cells can flare at just about anything. Stress?  Check. Too little sleep? Check. Oh, liked apples yesterday but not today? Check.

When mast cells flare it triggers a cascade that looks just like an allergy reaction, which means it can look like a lot of different things. Anything an allergy can do, a mast cell reaction can do better and longer.

I had a big flare two days ago. Hives, welts, swelling, asthma, intense itching, headache.

Now, I know I have MCAS and I am under treatment. I take 5 medications every day to prevent allergies, hives, itching, tamp down those mast cells, and treat my asthma. That was not enough.

I ended up having a trip to the allergy/immunology specialist I see who is amazing, but who is 1.5-2 hours away. I had to drive myself, which I don't like to do because of my daytime sleepiness, but it was an emergency - the hives and asthma were getting worse despite all of the drugs in my arsenal, and no one else could take me. He ended up giving me a shot of benadryl, so hubby had to take off work and come and get me anyway.  (Then he went back with a friend to pick up my car today.) I also got steroids to take for 12 days, which the allergist warned me would probably not be enough. (My research showed that treatment resistant hives can last for several weeks.)  I got one of my medications switched out with another one because it's causing swelling (angioedema). But the new one - benadryl again, has to be compounded by a specialty pharmacy because I'm allergic to the dyes and preservatives in the over the counter benedryl. I also got another inhaler to add to my other two.

This is life with mast cell disease. My medications regularly change due to adverse reactions. I have several that are specially compounded for me with hyperallergenic powders and no dyes or preservatives. Even hypoallergenic products often cause adverse reactions. And I never know when I eat if my body is going to like what I put in it or not.

All of this makes my life really random. I never know how sleepy I will be, if I will have insomnia in addition to the normal daytime sleepiness, if I will have an adverse reaction, need to be near toilets or ice packs, or if I will be really out of breath, and I need to always have access to water to take medication. I take medication a minimum of 4 times a day.

I plan things, but I often require flexibility in making the plans happen. Dinner with Mom may be put off for a month. I may sleep through movies with the kids or be up all night and dead to the world all day. I really just don't know. I may plan to work on drawing and clear my schedule for several hours only to have blurry vision or tremors and have to go do something else instead.

This is life with mast cell disease.