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.
Related posts
- November 2024: MCAS, AI, and the signed emergency protocol
- May 2025: I can eat anything… kinda
- July 2018: What goes up must come down (a blog post about high dose prednisone)
- Want to learn more about my experiences and help others by supporting this blog? Become a Patreon.
- Interested in re-reading my remission journey? Read the posts.
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