Everyone likes to be in control, myself included. It's not a strange desire. Yet, because of medication, sometimes, I and others like me, yield it. The true battle of attrition is the one that takes place with my will and the new appetites afforded to me by prednisone.
PREDNISONE.
It’s been a big part of my life, during childhood and especially now in my adult years. This seemingly innocuous pill (it’s usually white, yellow or orange) has a myriad of uses. Think of prednisone as an overeager friend, someone that wants to be helpful and helps to your own detriment if you accept their help for too long.
PREDNISONE.
This wonder drug is in the same family as cortisone and hydrocortisone. It can be used to treat a myriad of diseases and conditions besides my lupus, including, allergies, and asthma. "Prednisone is in a class of medications called corticosteroids. It works to treat patients with low levels of corticosteroids by replacing steroids that are normally produced naturally by the body. It works to treat other conditions by reducing swelling and redness and by changing the way the immune system works" (US National Library of Medicine, 2020). When I first started taking it I felt capable of lifting a house. I knew that I couldn’t but that whole “Burning Heart” Rocky theme echoed in the back of my head those first few months. In small doses, prednisone is acceptable, helpful, even life-saving. This anti-inflammatory medication over a length of time, however, has lasting, sometimes permanent effects. Eventually, the music has to stop.
I started prednisone when I was at peak preteen age. This medication causes weight gain, acne, mood swings, insomnia, nausea and more. Imagine experiencing that and puberty at the same time. I wasn’t comfortable with what I looked like for a long time. Being around other teenagers made growing up with disease both frightening and awkward. My bullies made fun of features on my body, my ice-cold hands as they tried to snatch at them, my already thinning hair, the fact that I was fat but “flat-chested”. When it came to my friends, they didn't know how to treat me and I wasn't sure how to explain my condition. At the end of high school, I began to accept my disease. I began to understand what bullies were truly threatened by; self-esteem. I fought back by doing my damndest to stand out on MY terms. It also taught me how to let go of those who can't handle me at my worst. Hearing that I would be on medication for the rest of my life, at age twelve, was a pill I couldn’t swallow at first but I learned. Now, I know it means being courageous and facing your fears every single day.
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Being on prednisone too long causes bone weakness, fatigue, and makes us manic. For myself, it feels like ants riding my skin into my brain. I feel jittery, with a burst of energy and then lethargic later. It’s being multiple people in one body and it’s hard to be around people when feeling like that. That ‘roid rage is real folks.
What does beating prednisone look like?
The autoimmune world is very familiar with prednisone, a lot of us are trying to beat it. Beating prednisone is becoming healthy enough that you can “taper down”. It’s not safe to simply quit prednisone. One has to taper down in increments. Withdrawal symptoms are real and they happen almost immediately after stopping the medication. It starts with weakness and body pain. Your body begins to realize that it is not super-powered. Then you become fatigued, body heavy, nothing wants to move. Then the appetite dies down, nothing satiates, food disgusts you. The rage you had when you were on the prednisone? Tripled and doubled again, you are a hot ball of rage. Yet, every time the doctor knocks down those numbers on the milligrams, you feel encouraged.
During a period of my life, when my brain was swelling it took 1,000mg of IVed steroid in my veins to get my body to calm. I had to be told about the event afterward, I was so out of it. After months in the hospital to rehabilitate I was released on 80mg. My prescribed doses of prednisone in comparison to average doses were pretty high. Prednisone usually starts at doses as low as 5mg and in pill form the highest dose is 50mg. On 80mg I was a different human being, a creature of appetites, all of them demanding to be satisfied at once.
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My partner rides shotgun with me through all my manic episodes and all my lows. He understands that there are rampant emotions inside me and that I’m not always in control of them. Little things like clothes on the ground, dishes in the sink become battlegrounds. Sometimes, I’ll cry to myself and not understand why. Everything seems huge when you’re on prednisone, every moment is a stage performance. When I need to be on it, I make active strides to keep myself collected. I let my partner know that I will be taking the drug, let him know that I’ll be intense while I’m on the drug.
He knows me and knows when I’m on it, that I’m still responsible for my actions. I want to be held accountable because at the end of the day I am working to beat prednisone. This might be a mindset that’s harsh but it keeps me from lashing out and helps me to grit my teeth through the little things. Having healthy outlets such as art, singing, and spending time with loved ones usually helps me with staying grounded. Knowing the times when I need to surround myself with people and when I need to distance myself is key to maintaining my positive relationships. Knowing who I am is key.
You on PREDNISONE? Check your spirit! (click for video link) (Megan, 2019)
Right now my prednisone combatants, we are living in a harsh environment. Many of us users are on this and other immuno-suppressive drugs. Another terrifying side effect of this drug is a weakened immune system and a slower healing rate. This means that an illness such as coronavirus could cause irreparable harm, even death. This drug builds us up, breaks us down and leaves us exposed. Don’t be an adventurer on prednisone, remember how important it is to maintain healthy habits and relationships. This article is to let you know that you are not alone. Being on prednisone might make you feel not quite like yourself but you are still worthy of love and acceptance. Right now, some of you are even hydroxychloroquine users, the drug now being used to treat the coronavirus. I'm on it too. I too live in fear of not having enough of this medication, of being left to deal with my lupus pain while my drug is assigned to other uses. Advocate for your rights, determine the best method of health according to your doctor and according to your gut. One thing I’ve learned from taking prednisone is that I can control parts of myself that most people have never had to. I’ve learned that my will supersedes anything I take orally or intravenously. Use the tools you have available to you, to be the person that you want to be.
Prednisone (A Poem)
It is apart of my life.
Prednisone.
It lifted me up.
Prednisone.
It is only a milligram to my massive presence.
Prednisone.
I bottle you not the other way round.
Prednisone.
You multi-facet me but don’t own a thing.
Prednisone.
I’m still breathing, thanks.
Prednisone.
Whole, with or without you.
Half tabs and full tabs,
the challenges won’t stop me from being.
Won’t stop me.
Prednisone.
(Happy National Life Writing and National Novel Writing Month!)
References
Fields, D. R. (2019, October 31). Steroid Side Effects: How to Reduce Corticosteroid Side Effects. Retrieved November 16, 2020, from https://www.hss.edu/conditions_steroid-side-effects-how-to-reduce-corticosteroid-side-effects.asp
Megan, D. (2020, August 01). Am I Crazy? The Psychiatric Side Effects of Prednisone. Retrieved November 16, 2020, from https://prednisonepharmacist.com/side-effects-solutions/am-i-crazy/
Megan, D. (2019, September 17). Prednisone - How to Cope with Mood Changes from Prednisone - Psychiatric Side Effects - Crazy. Retrieved November 16, 2020, from https://www.youtube.com/watch?v=ChMPXJpOod0
US National Library of Medicine (Ed.). (2020, October 27). Prednisone: MedlinePlus Drug Information. Retrieved November 16, 2020, from https://medlineplus.gov/druginfo/meds/a601102.html
About the Creator
L Sophystra
Writer, singer, painter, dancer and spoken word artist. Come into the world of the Lady. Diversify what you know, living with lupus since age 12, this unique artist offers perspective that will change your heart and mind.
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