Sunday, February 27, 2011

The Prednisone Rollercoaster

Most of us living with IBD have been put on steroids. I have this love/hate relationship with the drug. When I woke after my colonoscopy I instantly had a perscription for Prednisone in my hand. I had no previous knowledge of what the drug is like, nor did I realize that it was one of the most difficult ones to stop taking. I suppose when the doctor sees severe inflammation they jump right to Prednisone for a quick solution. I would have liked to discuss my options, but when you know so little about IBD, you're vulnerable.
At first I was at 40mg a day. The drug made me feel lethargic and emotional. However, after a few weeks my stomach aches and cramping reduced greatly. At the beginning I had this euphoric feeling that I was getting better. After two months I was back to the gym and able to make it through an entire work day. The only side effect I noticed was acute exhaustion.
After a month and a half I began to notice the long term affects of the drug - still mild in my mind. My face broke out in a dermatitis-like rash. My cheeks became puffy and more rounded than normal - I call this squirrel cheeks. The real name is moon face (the most difficult for me to accept). This is more of a vanity issue for me. I'm a girl! My "peach fuzz" all over my body grew darker and thicker. I noticed a mild, fatty hump under my neck (called a buffalo hump). I tried to laugh about my appearance. I would joke with people saying I was storing my lunch in my cheeks. My fiance bought me a buffalo stuffed animal to lighten my mood. I try my best to keep a sense of humor. Somehow I didn't experience weight gain - the only positive. Every other symptom listed for Prednisone, I eventually got after two months! It wasn't until I began tapering off the drug that I experienced the true fire and brimstone.
Tapering off Prednisone feels impossible. At first I thought it would be a piece of cake. I was hoping I could taper by 5mg, with trivial problems. Clearly I didn't understand how effortful this attempt would be.
I developed daily migraines, which led to seeing a neurologist. Which led to more medication, more money spent. I was constantly put back on a higher dose to relieve the withdrawal symptoms. Every few weeks it felt like I was back to square one. The lower the dose, the worse my symptoms became. Today I am still at 5mg, because tapering off has been so difficult. At this point, I'm ready to deal with the side effects and get off the atrocious steroid. To me, Prednisone is just masking my problems. Without being at 10mg or higher, my stomach pain has been severe. Right now I'm questioning if I'm experiencing adrenal insufficiency (I will know this week). I've looked at a list of withdrawal symptoms and can relate to every one. I am a Google addict. Just one more thing for me to worry about and feel like a hypochondriac.
I still have a list of questions I'm ready to present to my GI doctor this week. Especially because I started an anti-TNF treatment called Cimzia in November. How can I possibly know if it's helping while I'm still on Prednisone? If my current pain is all related to Prednisone, then I refuse to increase my dose. I know I would feel better if I was at 10-15mg, but eventually I would have to begin tapering and go through the agony....again!
Since this disease is still new to me, I'm unsure what my stomach pain means. I'm comfortable trusting my judgment, but unsure what constitutes a flare. If Crohn's means having flare-like symptoms for a month at a time, then I'll live with it. I have no other choice. However, if it's all caused by the Prednisone, I will continue to taper and never look back. I am determined to be off Prednisone. I know my life will have some normalcy once I'm off the steroid. Hope is what will motivate me to get off this frustrating drug.

These are a few pictures that display the "moon face." I have seen others have it more severe, but to me it's enough to cause bother.
Before Prednisone:

After taking Prednisone (also at a lower body weight):


  1. Aww Car! I had to take Prednisone also and I completely relate - especially the migraines and moon face side effects :( I'm so proud of you for writing about all of this and dealing with all of this stupidness. I love you!

  2. Carly, thank you for the intimacy through your words. I am looking forward to time spent with you, Antal, and Jessie. You are loved!!