My Love/Hate Relationship with Prednisone
To me, prednisone can be described in three words - wonderful yet wicked.
Prednisone, or oral corticosteroids, is often prescribed for short periods. This usually happens during an acute flare-up of asthma symptoms to treat the increased inflammation. My doctor always calls these "bursts." Most people can take oral corticosteroids for a few days and then go back to their maintenance medications once the steroid course is finished. For me, this looks a lot different. My experience with prednisone has been on steroids, both literally and figuratively. 1
The beginning of my love-hate relationship with prednisone for my asthma
From late 2019 to late 2020, I was on a course of steroids at least once a month. Counting the number of "bursts" that year, the total was around 20 times. Daily low-dose prednisone had been mentioned a few times, especially after some pretty hefty courses. Deciding to start chronic steroids was no light decision, especially as I was a pediatric patient, but we had reached a point where my lungs desperately needed something stronger. Finally, the doctor's appointment arrived that left me walking out of the office with a prescription for oral steroids to be taken every day (indefinitely) and a healthy dose of fear. The rest is history, and I've been on prednisone for an extended period of time.
The hate: Negative side effects
I was no stranger to steroid side effects from previous experience, but thankfully I adjusted to the more minor effects after a few months of daily prednisone. Unfortunately, I have not evaded some of the more significant or long-term effects on my adrenal system, GI tract, or bone density. My last DEXA scan showed osteoporosis and being so young, there is not much I can do to treat it until I have a fracture, which seems more probable than possible.
My body is so dependent on this medication that my adrenals do not function independently anymore and will likely not respond adequately to additional physiologic stress. I carry an extra stash of prednisone with me everywhere along with an emergency steroid injection in case of an adrenal crisis. Speaking from experience, administering the emergency shot is not a good time.
This does not even take into account how steroids have impacted me mentally. Prednisone tends to exponentially increase my anxiety and irritability. In addition, being a teenager (or anyone quite frankly) and coping with the notorious weight gain and "moon face" has been a challenge. Comparing pre-prednisone pictures to current ones is something I usually try to avoid, especially since I look like two different people.
I have trialed all the steroid-sparing treatments in the book, from four different biologics to anti-inflammatory medications to immune modulators, all with no success. I have tried to decrease my doses even just the slightest bit without any luck. My team and I both - reluctantly - agree prednisone is here to stay for the near (but probably far) future.
Victories anymore are being able to maintain on my low dose rather than having to increase. Just because I take daily steroids does not mean I get to avoid the "bursts" and high doses still, but it does make me ever so grateful when I get to return to maintenance.
The love: Helping my lungs
I may hate some of the things that resulted from prednisone, but I can never fault my team for doing all they can to help me. I also have so much to be thankful for when it comes to my morning dose of prednisone. Sure, there is a lot I have to put up with, but without this medicine, my lungs would not even be cooperating the tiny bit they do.
My daily steroids have allowed me to be a full-time student, working towards my dreams and goals, and they have likely kept me from getting even worse over time. The love is hard to find sometimes when I get so wrapped up in my hatred for prednisone, but I have it to thank for any quality of life I experience, and especially my newfound resilience. If I can handle daily steroids, I can handle anything.
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