Tag: MCAS

My adrenals didn’t RSVP to my MCAS remission party

Keeya and others in a Zumba class on the pier

When my MCAS symptoms went into remission in April 2021, everyone wanted to know how long it’d last. After years of trialing medications, suddenly fragrances no longer bothered me, I could eat anything I wanted, my joints stopped subluxating, and I could stand without fear of passing out. What if remission was temporary and I turned back into a pumpkin without warning? There was no research or fairy godmother to guide me. 

In June 2021, I wrote, “Several people have asked if I worry about remission ending. I don’t. The end of remission would probably be soul-crushing. No one knows how or when anyone’s MCAS baseline will change or if treatments will stop working. I am still susceptible to trauma, infections, stress, and so many other immune system triggers. Everyone is. But I know I can handle it.”

So, I set out on a 10 day road trip from Seattle to Los Angeles. Within 24 hours of landing in Seattle, I walked 22,937 steps through three different parks. Exhilarated by my body’s stamina, I wanted more, so I joined a group of strangers for a Zumba class on the pier in the 90F sunshine. I had zero interest in Zumba, and didn’t even know what it was, but because my mast cells would have despised it, I was determined to give it a try. I flailed and sweated, trying to keep up with high energy dancers. Drunk on exercise endorphins, I felt invincible.

Back in the hotel, my body revolted. As first, I assumed it was dehydration or heatstroke, so I chugged some water. Then I vomited and the bathroom began to spin. Within minutes, I went from “I absolutely deserve this” to “is this the end?!” 

I looked in the mirror. My face and neck were not red at all. My throat felt fine despite the light fragrance in the room. Maybe I caught COVID? I vomited again. A wave of doom reminded me this had happened before. Shortly after my MCAS diagnosis, I thought I could handle travel, but I ended up fighting for my life in a Florida hospital and wishing I’d never left home. Was this also a big mistake? 

I tried not to worry about the implications. I just needed to regain control of my body. I dug into my medication bag and retrieved my bottle of prednisone… which I had just stopped taking.

I started using prednisone in February 2015, months before my MCAS diagnosis. Like many MCAS patients, my MCAS symptoms had been ever-present since childhood, but since the diagnosis didn’t exist back then, I accepted my symptoms as background noise in my daily life. 

Mast cells don’t like to be ignored. 

At age 28, my mast cells ramped up to a new level of aggression, inflaming my muscles, joints, and tendons. Although the MRIs came back normal and I received a disability parking permit, I cried limping into work each morning. My hip sockets felt as if they contained shards of glass and my quadriceps felt like overstretched rubber ripping with every step. As a last ditch effort, my rheumatologist prescribed prednisone, and my pain subsided. My rheumatologist quickly warned me prednisone was not a long-term solution because of its risks like adrenal insufficiency. I begged for refills, so I didn’t lose my job, health insurance, and mental health while fighting for a diagnosis. 

Then on May 29, my throat swelled for the first time. We weren’t sure why, but my doctors threw prednisone at it without any hesitation. Throat swelling scares rheumatologists.

For the next six years, I took low dose prednisone daily in order to eat, move, sleep, breathe, and work in combination with other MCAS medications and disability accommodations. Prednisone was also part of my premedication and rescue medication protocols, helping me to survive severe reactions, surgeries, and procedures. (But not that one brand I’m allergic to!) For me, the risks of MCAS (e.g. GI bleeds, hydronephrosis, anaphylaxis) outweighed the risks of prednisone (e.g. diabetes, osteoporosis, adrenal insufficiency).

Within an hour of taking prednisone at the Seattle hotel, I started to feel better. I had stopped taking prednisone, because I no longer needed it for MCAS. Although I resumed my low dose for the remainder of the trip, it took me weeks to realized I had almost Zumba-ed my way into adrenal crisis. Both exercise and heat burn cortisol quickly. If you don’t have adequate cortisol in your body, you die. I would have never knowingly spent all my cortisol on Zumba, FFS. 

I thought I had tapered slowly enough to avoid adrenal insufficiency, but my assumptions were way off. (Spoiler: After 6 years of use, it took an additional 3 years to taper off. And I’m considered lucky.) I realized although I was in remission, my body was still healing from years of damage from MCAS. 

In 2022, I was diagnosed with secondary adrenal insufficiency by an endocrinologist after realizing I couldn’t navigate tapering alone. No test was necessary for diagnosis considering I was still dependent on steroids and had used them for many years. Prednisone and other glucocorticoids suppress the pituitary gland from creating ACTH which simulates the adrenal glands to make cortisol. (So, cortisol and ACTH blood tests aren’t usually helpful if you’re on glucocorticoids. I wish I had gotten baseline tests before starting prednisone.) If your adrenal glands are suppressed for too long, they can permanently stop making cortisol. 

Primary adrenal insufficiency is when there is damage to the adrenal glands affecting the production of cortisol and aldosterone. I did blood tests to rule out primary adrenal insufficiency. 

In our 2022 MCAS Q & A, Dr. Afrin and I discussed adrenal insufficiency.

This blog post is one of a three part series on my experience with secondary adrenal insufficiency. In June 2024, I successfully tapered off prednisone and my adrenal glands began making a normal amount of cortisol again. However, I still must monitor for symptoms of low cortisol.

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Tips for navigating MCAS remission

Keeya walking in the Pacific Ocean

Just like there were no guidebooks for mast cell activation syndrome (MCAS) when I was diagnosed in 2015, I’ve had to navigate remission on my own. I began blogging to an extremely small audience, so part of me hopes someday this post will serve a bigger audience too. But mostly, I hope MCAS diagnosis and treatment improves so that no one has such a drastic journey from illness to remission anymore. 

(Most cases of MCAS are not as severe as mine was.)

Today, I am celebrating three years of MCAS remission, and it still feels surreal. I still have imposter syndrome about the most mundane activities like riding in an Uber or going to a gym. I tolerate fragrances, although I still try to avoid them. I can eat whatever I want, but the majority of my food is organic. I am a competitive figure skater.

Remission has been challenging to document because I want to live, not write about living. Here are few tips I’ve complied from my chaotic notes over the past three years:

1. Do not go to a grocery store without a plan

You know how they say don’t go to the grocery store hungry? Well, definitely don’t go to the grocery store if you’ve been hungry for 5 years. For context, only 15 foods (no spices!) were safe for me to eat before remission.

The freedom of not needing to read labels is exhilarating! My joy, however, was quickly overshadowed but the realization I didn’t remember how to cook. I couldn’t even decide what I wanted to cook. At one point, I actually left the grocery store with no food because I was completely overwhelmed by the choices. Switching to online shopping and order pick up helped me plan actual meals instead of smorgasbords of histamine, salicylates, and FODMAPs. 

2. Do not share your remission story at a bar; you cannot handle free alcohol 

On related note, do not try to use your nausea repression skills on tequila. That’s how I learned I can shoot calamari out my nose. 

3. Your MCAS fears will no longer serve you

I still have to give myself pep talks to overcome my MCAS fears, which most people can’t relate to. My illness was traumatic, so it’s no surprise my remission has been a psychological rollercoaster. Here are the fears I’m especially proud of overcoming:

  • Traveling alone with no service dog
  • Orange juice
  • Strength training
  • Hugs
  • Crowds
  • Leftovers

Again, there was no guidebook for my remission, so I just clung to my mantra: choose joy over fear. I have no regrets. (I still haven’t overcome my MCAS fear of jeans or bikini waxes, neither really spark joy either.)

4. Pursue your childhood dreams; no one will know your age anyway

In remission, you’ll seek adventure like a 20 year old, exude the joy of 7 year old, but have the wisdom of a 70 year old–and thanks to hEDS, no one will know how old you are. Although remission may enable you to do “normal” things, your MCAS experiences will probably set you apart from your peers, so you might as well as chase joy not the status quo.

Remission is the ultimate permission to do whatever the fuck you want.

Nobody, including myself, expected me to pursue my childhood dream of figure skating. Instead of worrying about my health history or other people’s expectations, I tried it and fell in love. I have skated 2-4 times almost every week since I started in November 2021, because it fills me with immense joy. 

5. Beware of cults

The isolation I faced before remission is the hardest aspect for people to understand. I couldn’t even invite my mom over for my birthdays without risking a severe MCAS reaction to her clothes and hair. I craved community the most. When remission hit, I wanted to be EVERYONE’S friend. 

I quickly learned: Many people will be attracted to your remission joy but repelled by your boundaries to protect it.

As an extrovert, I was so desperate for connection that I couldn’t recognize superficial relationships. I got sucked into a borderline cult before I could say “shake it ‘til you make it.” Although I accepted the glorified hospital socks, I couldn’t reconcile my boundaries with their marketing goals. 

Remission is precious. It will take time to find an in-person community that values your presence, truly celebrates your journey, and respects that you will not take your health for granted.

6. The hard work of healing doesn’t end at remission

Remission doesn’t heal all MCAS damage overnight. It doesn’t even exempt you from doctor appointments. (I was so mad when I realized I had to return to the clinic for refills.)

Although my inflammation is down and my gut juices have returned to their appropriate spaces, some of the damage in my body caused by MCAS is permanent (e.g. gallbladder, kidney, GI tract, dura). Other parts (e.g. my muscles and adrenal glands) are still recovering. 

Remission is the ultimate permission to do whatever the fuck you want, but if you want to do whatever the fuck you want for a long time, I recommend dedicating some time to healing. Every day of remission, I have taken steps to heal my adrenals and strengthen my body. 

Even in remission, Dr. Afrin’s advice rings true: patient, persistent, and methodological trial and error pays off. Not only I have gained muscle while regaining my adrenal function, but I have also begun tapering my MCAS medications.

Interested in re-reading my remission journey? Read the posts.

Enjoy reading my remission posts and want this blog to continue? Become a Patreon.

P.S. April is Adrenal Insufficiency Awareness Month and Premenstrual Dysphoric Disorder Awareness Month! Both conditions can be caused by MCAS.

Mast cells on ice 

Ice skater in a pink dress

This week, I am celebrating TWO YEARS of mast cell activation syndrome (MCAS) remission. Most of my fellow skaters have no idea how terrible and scary my MCAS symptoms were from 2015-2021. They don’t understand how impossible skating was for me before remission. I look “normal” aside from my steady bursts of humor and wiggles.

Note: Competitive skaters with less severe mast cell activation (MCAS) symptoms do exist. I’ve met several of them! MCAS symptoms can range from discomfort to disability. My remission is incredible is because of the severity of my illness despite years of proper treatment. Many doctors gave up on me. I was told I would likely never be able to use stairs, let alone compete in athletics. 

I never want to take my remission for granted. I never want to forget how without treatment, MCAS complicated every aspect of my life: eating, moving, sleeping, socializing, and breathing. Some people keep a gratitude journal; others do daily meditations. 

I practice gratitude by counting the ways my pre-remission mast cells would have tried to kill me every time I walk into a skating competition.

First, assuming I could tolerate the usual fragrance (perfume, shampoo, detergent, deodorant, etc.) of a public event, one whiff of hairspray would swell my throat before I could set my skate bag down.

For me, this usually wouldn’t require a stab in the leg, a ride in a fancy taxi, and an expensive hospital bill with a side of medical gaslighting. (Like many MCAS patients, I haven’t had to use an EpiPen, but I definitely carry one.)

Hopefully, I would be able to force pills down my throat and play the game: should I stay or should I go?!

Obviously, fleeing toxic air is always a good idea. 

Why would I stay? To overcome my disability and skate anyway? Absolutely not.

I would stay because of the bathroom, projectile vomit, and uncontrollable pooping. I don’t like squirming out of my skating dress on a good day, so I can’t imagine doing so in a full body rash. Best case scenario: I empty my guts and someone drives me home where I recover for three days. 

Okay, so let’s pretend I got a disability accommodation to prohibit hairspray inside the arena and nobody smells like MCAS death. 

My mast cells don’t like the cold. Once inside the arena, my mast cells would begin pumping chemicals into my blood–dilating and permeating my vessels. This can trigger poor circulation, dizziness, and weakness–a recipe for skating disaster. My numb, tremoring hands would likely need help tying my skating.

So why not just warm up? Well, my mast cells don’t like that either. Just a few off-ice waltz jumps would be enough to the ignite the inflammatory process–pushing my lungs, heart, and brain into overdrive and destabilizing my hips and feet. 

As my body would swell, every rhinestone on my dress would be at risk of spontaneous ejection. Other skaters would attribute in my urgent and incessant need to pee to performance anxiety, when really histamine would be inflaming my bladder and literally making it smaller. In bathroom mirror, bright red rashes would outline my dress as my skin reacted to the synthetic fabric–definitely not the pretty lines Griffies aspires to. 

No matter the temperature, I would be spinning before I got on the ice. 

This where my gratitude practice ends. 

Don’t worry–when I check in with the rink attendant, I stop envisioning my demise.

When step on the ice, I don’t think about my mast cells at all. I take a deep breath and my body swells… with gratitude.