Category: Remission

A wrinkle in my remission

Three baby bunnies

Last summer, I got my fillers removed. 

Not the gel type, of course. I would never threaten my mast cells like that. 

After nine years of prednisone, I successfully tapered off and watch my face deflate. Corticosteroids don’t just cause appearance changes with dreadful names like “moon face” and “buffalo hump;” the redistribution of fat, particularly around joints, can be painful. Although my skin lost its prednisone glow, I was thrilled I could slip my arms into clothes and bend my knees without discomfort. 

One of the very few perks of mast cell activation syndrome (MCAS) can be looking younger. Overactive mast cells can plump tissue, boost circulation, and remodel connective tissue, all while training humans to evade sunshine like a vampire. I wrecked my flawless skin no more than two weeks into MCAS remission when I flew to Florida before remembering beach vacations require sunscreen.

For five years, my skin care routine included Benadryl cream and cromolyn squirted into lotion to combat allergic shiners and facial flushing. Now I am using Tretinoin, which literally increases the number of mast cells in the skin, to fight wrinkles and boost collagen. Yes, my mast cells are so stable that I have a prescription to recruit more.  

Soon after stopping prednisone, I developed a prominent wrinkle anyway. Rather than feel disappointed, I was perplexed. The wrinkle is on the bridge of nose, a horizontal line between my eyes. Who gets their first wrinkle on their nose? 

When my mom informed me it’s called a “bunny line” I dismissed it as some kind of maternal euphemism. So, I Googled it and learned not only is that the terminology, but it can be caused by smelling something repulsive.

DID MCAS GIVE ME A WRINKLE? All this time I’d been holding onto the fact at least my mutated mast cells made me younger, when really, they were engraving my face.

Every time I entered a bathroom with an air freshener.

Every time a coworker entered a meeting wearing perfume (despite being told not to).

Every time laundry fumes wafted over the sidewalk.

Every time I scoured a new room like a blood hound hunting VOCs.

Every scented trash bag and Amazon package.

Every freshly sanitized room.

Maybe wrinkles should merely indicate where the smiles have been, but in my case, they indicate every MCAS ambush I fought to survive. I certainly have earned this wrinkle and I will wear it with pride–mostly because Botox seems like a terrible way to protect my remission. 

Or maybe, I’m just overly expressive. And cute as a bunny?

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I can eat anything… kinda

Table of food

I have become an enthusiastic eater. I would say a foodie, but I still am learning basic knowledge about foods and flavor. Yes, I did try to eat the whole edamame pod.

When my MCAS symptoms went into remission in 2021, I could suddenly eat and exercise without worrying about a life-threatening MCAS reaction. Embracing my new freedom, I decided to simultaneously taper off my steroids, play all the sports, and become a vegetarian. Well, technically, I became a pescatarian, but when you live in Minnesota–same thing.

Why would someone who just experienced severe food restrictions for 5 years CHOOSE to limit their foods?!?

First of all, I never wanted to see chicken again. From 2016-2021, plain chicken was one of about 15 foods that my mast cells could usually tolerate if prepared correctly. No pepper, no oil, and definitely no garlic. Fresh or frozen, but never refrigerated. My work lunch, hospital meal, and birthday dinner was plain chicken with a side of plain white rice. 

(Note: I don’t call it a “safe food,” because any food can trigger a MCAS reaction if your digestive system isn’t working. Chicken was easier to digest, but there were plenty of times I just had to skip meals because fragrance, heat, or other stress rendered my digestive tract useless.)

Second, I was scared of eating meat. If you recall, I was bitten by a lone star tick in April 2021, an insect notorious for carrying alpha-gal, which can cause severe allergic reactions to red meat and other mammal products (e.g. beef, pork, lamb). After coming so far, I refused to live in fear of anaphylaxis. So I decided to stop eating meat until I could get tested. (It takes awhile for the body to produce IgE antibodies.) 

At the same time, I knew I needed protein to play sports. Although I could finally digest soy, I never dreamed of MCAS remission for the sake of eating tofu. Gross. I did my best to find alternative protein sources, but was so relieved when I tested negative for Alpha Gal in October 2021. I slowly resumed eating meat, and felt better than ever. I assumed my protein deficiency days were behind me.

Meanwhile, my attempt to taper steroids on my own did not go well. An endocrinologist informed me that my decision to become a competitive athlete at the same time was a bad, if not impossible, idea. When I increased my strength training and experienced symptoms more severe than my endocrinologist could explain, she blamed my mast cells. 

“Maybe you don’t know you’re having a mast cell reaction,” she said.

“Maybe you don’t know how to help me,” I thought, as I did my best not to rage burn all my cortisol on her ignorance.

No one would have blamed me for stopped that doctor, but I did some research instead and asked, “Could I get a prescription for a continuous glucose monitor? My blood sugar seems to be tanking in conjunction with my cortisol and a Freestyle Libre 3 could help me stay safer. And then I would have more information for the upcoming appointment.”

My doctor had never informed me that cortisol regulates blood sugar or suggested I test my blood sugar when feeling low cortisol symptoms, but she did prescribe the continuous glucose monitor. At 3 AM on the first night, the alarm screeched as my blood sugar plummeted. It continued to document my lows in the middle of the night and after my workouts. Suddenly, my endocrinologist was not concerned about my mast cells.

Of course, I invested in juice boxes, but I also became more curious about protein, which can help stabilize blood sugar. My life changed when I asked my fellow competitive skaters how much protein they eat. In disbelief, I Google my recommended amount. My jaw dropped and then I shoveled yogurt into my mouth.

Over the years, I have learned the intricacies of mast cell disease including dozens of mast cell mediators and the NDCs of particular medications, but I never learned how much protein my individual body needs. Unlike these skaters, I had limited experience with sports as a kid. I was too busy being sidelined by illness or injury to learn how to build muscle.

When my MCAS symptoms became more severe, nutrition took a permanent back seat. I was simply trying to survive. Eating was often dangerous. Right before remission, my stomach began bleeding, a life-threatening complication. However, I can’t help but wonder how understanding my protein needs then might have helped me. 

With this new information, I downloaded a protein tracker on my phone, started hitting my goal, and began feeling better. I still struggled with low cortisol, but it became more manageable. I joined a gym with a body scanner to track my muscle growth and ensure I was correctly fueling my body. (This also helped me pace my steroid tapers.) To this day, it angers me that a doctor with no training in MCAS blamed my mast cells before asking about my nutrition. 

A few weeks ago, I celebrated four years of MCAS remission. I no longer take medication for MCAS and I can eat anything… but I choose to prioritize protein. I’ve even rekindled my love for chicken, as long as it’s smothered in sauce or spices. Protein has allowed me to continue to heal and thrive as an athlete. High FODMAPs, salicylates, and histamine foods are all good now–low protein not so much.

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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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