Prednisone 101: What doctors didn’t tell me (Part 5)

15 prednisone-fuelled moments from journalism school

1. I’d only been back in Ottawa a few days and my face was like a pregnant woman’s belly. People couldn’t keep their hands away.

Walking with a purposeful bounce across the Bank Street bridge, I waved at an approaching  classmate. She looked at me oddly and didn’t wave back. By the time we were face-to-face, she leaned in, squinted, and then gently poked my face with her finger.

“Shelley? What’s the matter with your face?” she squealed. “Are you sick? Did you have your wisdom teeth out?”

I imagined my neo-cherubic cheeks popping, squirting prednisone juice all over her.80mg

Others simply didn’t recognize me. While sitting in a campus pub, I noticed my former roommate Jen waiting tables. I prepared to launch into my brief explanation that I was on a medication called prednisone and it caused Fat Face. But she served me hot chocolate and took my money without a second glance.

2. I phoned my parents and shrieked at them. I demanded to know why they didn’t tell me I was unrecognizable. I’d been warned that prednisone caused “moon face,” but I looked like a lollipop, an orb on a stick. To them, my change of appearance caused by 80 mg of prednisone had been gradual.

3. I resigned as news editor of the Charlatan before the first issue of the school year and confessed I had health problems. I kept my job as a teaching assistant for second-year television students. It turned out that being with students who had no idea what I usually looked like was a relief.

4. The high-dose prednisone made me twitchy: thrashing the covers at night, queue jumping and arguing by day, then suddenly exhausted from all of the battling.

5. Did I mention I had a boyfriend? We’d started seeing each other the previous year. If he thought my face was fat, he was wise enough not to share. Aside from having a car, he was an impressive talent at TV news production. He agreed that we could do a documentary together for our fourth-year honours research project. Some classmates, even professors, thought I was riding on his coattails, not just in his passenger seat.

6. My new Ottawa-based rheumatologist told me the fat face wouldn’t disappear until my prednisone dose was as low as 15 mg. But because I still had significant pain around my lungs, she wouldn’t lower my dose at all.

7. I bought a bicycle with fat wheels with the money I earned at the Vancouver Province so I could ride to campus, even in winter.

8. My skin started ripping.60mg

A friend pulled me backwards onto our couch, my belt dug into my hips, and I felt large gashes open up on each hip. When I phoned my rheumatologist, she asked, “Didn’t anyone tell you that prednisone makes your skin really thin?” She reduced my dose to 60.

9. Sometimes, when my roommate Anne wasn’t home, I’d put New Order ‘s Low-Life and dance to “Love Vigilantes,” about a soldier who finally comes home to his wife and children, only to realize he’s a ghost.

10. I got pneumonia. Then, my nose bled all of the time because my blood wasn’t clotting. I went to a party — one of the first I had the energy to attend — and spent most of it in a bedroom with my head tipped back, blood pooling in my ears.

11. My rheumatologist said I was very immuno-compromised from the prednisone, which is both an anti-inflammatory and immune system suppressant. I began tapering the prednisone from 60 to 50 to 40.

12. Ashley, Jack, Brad and Mrs. Chancellor became my closest friends. I’d lay on the couch at 4.30 40mgevery weekday to watch them. It would be 20 years before I outgrew the comfort and constancy they provided.

13. By March, I could breathe without pain, although not deeply, and glimpse my cheekbones. I felt naturally, not artificially, energetic. The rheumatologist told me I was beyond the worst of it and the prednisone had done its job.

14. Still riding high on the wings of prednisone, I applied for a job as a summer student at the Toronto Star, the most competitive reporting program in the country.

15. When I was hired, I didn’t tell the editors I was sick because I thought I was cured.

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13 thoughts on “Prednisone 101: What doctors didn’t tell me (Part 5)

  1. Jennifer Henderson

    Can’t wait for Part 6! This is really gripping, Shelley. I wish there was a scene where you went back to each of those doctors who dismissed you.

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  2. Jacquie Rougeau

    Shelley thanks for sharing. I too was diagnosed with Lupus right after having my 3 Children. I was 28. I was first told that I probably couldn’t have children. My first book that I read on the subject gave me little hope as well. I read that I had approx 10 years to live. I have been on prednisone a few different times. It certainly reaks havoc on your body. I am now on plaquenil to keep my immune system suppressed and Xarelto to keep my blood thin. Life hasn’t been easy and has certainly had its’ ups and downs but thru it all I try to remain positive. Thanks for your info and sharing your life thru your blog.

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    1. Shelley Page Post author

      Hi Jacquie, I’m on plaquenil now too, after a horrendous amount of cyto-toxic drugs over the years. My issues are less blood/cardio and more attacking of internal organs, etc. I’m glad you’re doing well….And thanks so much for reading!

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  3. NIcole A

    Wow Shelley your story is very familiar to mine. For years I was getting the chest pain on and off. My GP told me it was costocondritis and idiopathic in origin . would give me prednisone and send me on my way. 2013 the day after Xmas my left arm went numb a couple days later I was no longer able to move it then it began to spread to my leg. My mom forced me to go to the ER and they gave me an MRI . I had a giant lesion in my spine basically causing a road block on the highway of my nerves. Two months in the hospital boats loads of scans and test and lots of solymedral and prednisone I too suffered from the moon face. Ugh and the amount hair that would grow on my face. I have been on 40 mgs since daily .. Along with cellcept plaquinil didn’t do much for me. Prednisone is the worst drug … But it gave me my life back. No one warned me.of the side effects . I loved yer visual list . I personally would add not to say ohhh I been on prednisone for … And it wasn’t that bad. Then I have to explain to said person yes you were on a normal persons dosing maybe starting at 10 or 20 and tapering down over the course of 5 days… I am on a way higher dose for a way longer period of time . I am a walking hairy moon faced overly emotional random hot flash having infection risk . so no I dont wanna hear about your 5 day taper .. Will be coming back to this blog its awesome

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    1. Shelley Page Post author

      Nicole, I totally hear you. No one can comprehend what it’s like to be on high dose, long term prednisone unless they’ve walked that road.
      I do hope that the plaquinil and cellcept end up being effective…I’ve been on both, and I’m still on the plaquinil. Cellcept made me vomit all of the time, so I had to switch to myfortic, which is similar.
      I can’t tolerate large doses of prednisone anymore, it actually makes me pretty crazy. Because my kidneys are quite impacted by my illness, I can’t metabolize the drug anymore. At 20 mg people need to stay away from me.
      I’m thinking I should do an entire visual list related to prednisone…
      .I love your description of the walking hairy moonface…..but i’m sorry you have to endure it.
      Are their signs that all the meds are making a difference? How is your energy level?
      Shelley

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