When I first was diagnosed with mast cell disease and learned my mast cells were overactive, I decided, “Okay, I’ll just be really nice to them. I’ll give them everything they want and they’ll settle down.”
Turns out, nobody, including the world’s leading mast cell activation syndrome specialist, knew what MY mast cells wanted.
Instead of receiving a set list of treatments, my doctor introduced the trial-and-error process, a methodical approach to medications and supplements, slowly and one at a time.
Struggling to eat, move, and sleep, I wanted to say, “Excuse me, sir. But I believe I am dying. I don’t have time to waste. I have bills to pay and dogs to feed. Please fix my mast cells now.”
Luckily, I heeded his guidance. At first, I improved with each incremental change: my joints ached less, my intestines were happier, and I had more energy. Each time he added a new prescription, my specialist warned me MCAS patients often react to inactive ingredients (e.g. fillers, dyes, binders, and preservatives) in medications, and to be mindful of any new symptoms.
“Which ingredients?” I asked.
“We can’t predict that,” he said.
For me, it started with FD&C Blue No. 1 Aluminum Lake. My mast cells didn’t care that my new medication was expensive, or that it was supposed to work. My mast cells only cared that there was a minuscule amount of blue dye in one pill and proceeded to sabotage my entire body. My vision faded, my heart raced, and I vomited like the girl in The Exorcist. One ER visit, three IV medications later, and two sick days later, I was still recovering.
My specialist urged me to try it without the blue dye.
“So, then it’ll work?” I asked.
“We can’t predict that,” he said.
There’s a saying in skating: “If you aren’t falling, you aren’t learning.”
In November, seven months into MCAS remission, I decided to pursue my childhood dream of ice skating. I envisioned myself gliding effortlessly on the ice, wearing a sparkly dress. However, when I stepped out onto the ice in my new blades and boots, I realized, “Wow. This ice is hard and slippery.”
I tried to avoid falling as long as possible, but inevitably my toe pick betrayed me, and I belly flopped onto the frozen pool. I moved just enough to indicate to others I was “okay,” whatever that means, and then laid motionless and contemplated my existence until the ice numbed my freshly bruised limbs and soul.
Not only are some of my skating falls pretty brutal, but if I want to get better, I have to get up and try again like it didn’t happen. If I hold on to my anxiety and anticipate a fall, I’m more likely to fail again, possibly worse. Same goes for mast cell disease. Mast cells are notoriously triggered by anxiety. If you are worrying about trying a new medication, your mast cells can become more reactive and therefore less likely to tolerate the new medication.
I often remind myself learning to figure skating has been much easier than learning to how to treat mast cell disease. It certainly has required less emergency medical care. Unlike skating with its tried-and-true techniques, every MCAS patient embarks on their own difficult journey to find their optimal treatment. There are many treatment options, but at this time, we have no way of predicting treatments or triggers of individual patients.
When I was diagnosed in 2015, my mast cell specialist said it usually takes 4-5 years of medication and supplement trials for an MCAS patient to discover their optimal treatment.
I promptly ignored him. No patient actively getting their ass kicked by their mast cells wants to hear this. However, it was absolutely accurate for me. I reacted to more MCAS treatments than I tolerated. It took me 5 years of trialing medications and supplements to find my optimal daily combination to reach MCAS remission. There was no magic pill, just a lot of trial, error, and renewing of hope.
In skating, although falling still hurts, you usually do get better at it. Your brain learns to track your movement more quickly and your body learns to fall more safely, protecting delicate bones. Although the MCAS reactions don’t get easier, you learn how to identify triggers and stop reactions more quickly.
Here are some tips and encouragement for MCAS trial and error, learned through my own experience both as a patient and skater:
- Celebrate your courage and hard work regardless of the outcome.
- Don’t quit, but do take breaks. Take time to recover physically and emotionally.
- A knowledgeable specialist may save you time and money in the long run. Most doctors are unfamiliar with MCAS treatment. MCAS specialists know how to methodically work through the treatment options and understand each patient is unique.
- Build relationships with other patients. They can help you avoid common pitfalls and cheer you on. Don’t forget to cheer them on too!
- Keep calm and put on your crash pants when you’re trying something new. For me, this is taking time off work, having rescue medications ready to go, and planning check-ins with friends.
- Track your all medication and supplement ingredients, doses, and symptoms. Sometimes reactions can be subtle and build over time or with increased dose. Organized notes can help identify trends and triggers.
- Compounding medications can help reduce inactive ingredients and risk of reacting.
Last month, I participated my first figure skating competition. Despite preparing my best, I knew falling was a real possibility and I was absolutely terrified. I showed up, not because I knew I would perform well, but simply because I don’t want my life to be dictated by fear. I want to try to get better.
