How Proper Treatment Changed My Life with MCAS

As someone living with Mast Cell Activation Syndrome (MCAS), my mast cells cause a wide variety of symptoms throughout my body. That being said, my chronic hives and gastrointestinal symptoms have always been—and continue to be—my most severe symptoms.

A childhood of sensitive skin

My chronic hives can be traced back to when I was a baby and was simply considered by doctors to have more sensitive skin than the majority of other babies. It wasn’t seen as anything overly outside of the ordinary, as babies are known for having sensitive skin.

When I was a toddler, I started being able to make some choices about clothing selection and expressing my preferences. I would often pick the same clothing items until they got too worn out to wear. Eventually, my parents learned that if there was a clothing item that I loved, it was best to purchase multiples. This process of mine continued throughout elementary school.

Creating a comfort uniform

Over time, starting near the end of elementary school, I started having my own versions of uniforms. For example, in the fifth grade, I was constantly wearing sweatsuits in a wide variety of colors, but mostly bought from the same brand when possible. By high school, I had switched over to a comfy black tank top and black leggings with a flannel. Once I realized that men’s flannels were comfier, they got added to my wardrobe.

Throughout my life, my chronic hives have continued to progress, and I tried my best to manage from a comfort standpoint.

Turning point with MCAS

However, in my early to mid-20s, the pain and the visible parts of my chronic hives increased tremendously following my “big sick” with MCAS. It got to a point where it was too much for me to handle by myself, so I met with an allergist and we worked together on treatment options. My treatment was meant to be for my allergies in general.

While some of the treatments allowed me to be able to breathe properly again after nine months of severe congestion and helped relieve some other symptoms, unfortunately, one of the treatments known as allergy shots made me sicker.

The challenge of misdiagnosis

Prior to the allergy shots, I was allergic to 80 foods. At first, they seemed to be working properly, but after around the eighth dose, I started reacting poorly and kept losing more food. Right before starting the allergy shots is when I first heard of MCAS, but unfortunately, that idea was dismissed by the allergist. I wasn’t knowledgeable enough about MCAS, nor did I have the advocacy skills back then to fight for a proper evaluation to see if my symptoms matched the MCAS diagnosis.

I’ll admit that the next half a year or so was quite a scary time as I lost more and more food. I was down to three or four foods that I could tolerate, and then I kept losing them one by one until there were none left. My chronic hives continued to worsen, and any clothing item or bedding touching my skin was incredibly painful.

Finding the right path to relief

Eventually, luck was on my side as my path led me to a hematologist who was well-versed in MCAS and put me on a treatment plan of H1 blockers and H2 blockers to start. I was automatically in a lot less pain and able to eat some more foods, even though my GI issues meant still having difficulty holding down the food.

Then, two months later, what I call my life-saving medication was prescribed to me: oral cromolyn sodium. It allowed me to eat so many more foods, to keep foods down properly, and it heavily helped my chronic hives with both the appearance of the hives and the severe burning skin pain that I was experiencing. After three months of this medication, I woke up for the first time with my skin pain not being my first thought of the day.

A hopeful future with MCAS

I’ve been on the three medications that I’ve mentioned now for almost six years, and my quality of life has continued to improve with them. My mast cells have become more stable. While my life with MCAS still comes with many challenges and daily symptoms, it’s a life that allows me to eat with only a couple of restrictions. I used to count how many foods I could eat, and now I count how many I can’t because that’s the smaller number of the two.

These medicines have made life so much easier, better, and happier for me! Due to these medications, I get to plan for the future again, and it’s a hopeful task instead of something overwhelming. I feel hopeful knowing that somewhere in the world research is being done and new treatments are being made.

If you’re struggling with MCAS, chronic hives, or the intersection of both, I hope that you remember that you’re not alone in this. I know it can be extremely overwhelming, but there is power in community and in scientific research.

May your symptoms lessen in the future and allow you to live the life of your dreams!