Category: Prednisone

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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Why viruses are scarier with mast cell disease

While the new year promised a fresh start, my mast cells were still reacting to what happened in 2019.

Around Thanksgiving, I caught a virus. I dragged my feverish body to urgent care and asked for a flu test. I needed to know if I should pack my hospital bag, which should not be confused with my emergency room bag. My ER bag is always ready and with me.

“Good news, it’s not the flu,” the doctor said.

“How long do you think this virus will last?” I asked.

“Generally, about 5-7 days and then you should be fine,” he said.

“I’m not worried about the virus,” I said. “I’m worried about my mast cells’ reaction to the virus.”

He sputtered a bit and tried to use “degranulate” in a sentence.

“I have prednisone at home,” I said, as I grabbed my coat.

Most people are used to hearing the dangers of the flu and other viruses for people with weak or suppressed immune systems. The flu is just as dangerous for me, but not because I’m immunocompromised. In fact, just the opposite.

My mast cells fight wars they’ve already won. They swiftly kill the virus, and then proceed to kill me. My immune system doesn’t know when to stop.

After seven days, the fevers waned, but I did not feel better. I attempted to go back to work, but the floor started bouncing. Benadryl every four hours wasn’t enough. I worried the pressure in my head would cause another CSF leak. So, I dug out my favorite poison: prednisone.

Maybe Ebenezer Scrooge just needed some prednisone, because within two days, I was buzzing with the Christmas spirit. As the prednisone tamed my mast cells, I shopped, wrapped, and decorated like one of Santa’s elves. Usually the holidays are a nightmare of unrealistic expectations, but this year I crushed my to-do list with energy to spare, confusing everyone. Don’t get used to it; you’re all getting unscented deodorant and a “bah humbug” next year.

The time between Christmas and New Year’s, when no one needs a calendar or real pants, is the perfect time to taper prednisone. For me, tapering prednisone means laying on the couch and staring at the wall, as optimism drains from my soul. I aimed to get it over with before the new year, because I wanted to start the year off on the right foot. Or left. At least standing.

Within a few days of coming off prednisone, my ear tubes began to ache. My mast cells were still reacting to the virus they killed a month and a half ago. I ignored it, hoping they would calm down, but the congestion in my head continued to build.

One night, after hours of painsomnia, I dreamed I went on a girls’ trip. The five of us innertubed from northern Italy to California (via the Mississippi River, obviously). The water must have been pretty rough, because I woke up with a subluxated jaw. The inflammation in my ear had gotten so bad that my jaw slipped out of the socket. I tried to ignore that pain too, but a spoonful of rice left me crying for another round of prednisone.

So instead of starting the new year motivated, I medicated. Luckily, this was just a cold. In 2016, I caught the flu and needed an ambulance and hospitalization.

I wish my mast cells had a reset button. I wish people kept their germs to themselves. I wish I could take prednisone for the rest of my life and become the most productive person in the history of the universe. Instead, I’ll embrace my solitary confinement and remind you not to kill me.