Friday, October 30, 2009

My love/hate relationship with Prednisone

I've been on varying doses of prednisone for about 12 years. Some times at 5 mg a day, sometimes at 20 mg a day. As with most prednisone stories, it started with love. I clearly remember the first day I was on prednisone. I had been on 8 aspirin a day to control my symptoms, but still, every day, my mom had to do my hair in a pony tail, help me get dressed and drive me to school. I couldn't walk that far and lifting my hands over my head was simply not possible. I remember writing my grade 10 year end exams where my fingers would stick in the shape of how I was holding my pen, and I would have to physically pry them open. At the time, I thought it was funny. Now - not so much.

I remember taking prednisone at night and waking up a whole new person. I could walk, better yet - I could run! I felt like I was myself again. I'd been a member of the basketball and volley ball teams a mere 4 months ago and then I couldn't walk to school. Little did I know the long-term cost of this new-found freedom.

My love affair continued when I wanted to have kids. Most anti-arthritic and immunosupressant meds don't mix with pregnancy - so prednisone at a higher dose is one of the few options available. During my pregnancy things went swimmingly, until I was diagnosed with gestational diabetes and for my second munchkin, I went on insulin. My daughter was born 5.5 weeks early, and my amniotic fluid was leaking for 1 week prior to delivery. It turns out, it was great that I was on prednisone, as they generally give steroids when babies are premature to help with lung development. In my case, I'd been on steroids for the duration of the pregnancy, so Chelsea's lungs were just fine. This is one of the very few favours prednisone has ever done for me.

My relationship with prednisone started to deteriorate when I really started paying attention to the side effects. I'd been on the drug so long, I didn't really notice that I have "mood swings" - although that seems like an understatement. I don't know that I recognized them for what they really are - hard to control fits of strong emotion that require a conscious effort to keep in check. I also have a sizable "hump" on the back of my neck - but since I don't see it all the time, I don't notice it.

I love it and I hate it. Right now now I'm slowing ending the relationship, one less mg per month. If all goes according to plan, April 1st, 2010 I will be be prednisone-free. Keep your fingers crossed.

Early Days

After I was diagnosed, I was admitted to Sick Kids for 2 weeks for treatment - I was in pretty rough shape. I had 8 cortisone joint injections in 8 joints in one day, because the lack of mobility and significant inflammation in all of my joints warranted some aggressive treatment. My wrists, my knees, my ankles and my shoulders. I remember being on the treatment table, staring up into the ceiling where there were purple butterfly decals stuck there. Given the 8 needles going into my body 1 by 1, who the hell thought butterflies on the ceiling would help any kid with that kind of pain?

My parents came to visit. My mom during the day, and dad would stop by at night after work. It was hard on all of us, likely more for my parents than for me. I, of course, didn't see that at the time. But now that I am a parent myself, I would go out of my mind if either of my children had to go through what I did.

I remember one night, my dad came to visit after work. He was a little tired from a long day, and I was wheelchair bound from the 8 joint injections. I was itching to walk, he wanted to sit. We cruised around the ground floor of Sick Kids to the day clinic area. After hours, it was empty. We could talk, laugh, visit. He sat, I walked. And then he invented the pain machine. It worked like this: I would hold his hands and all the pain I had would go to him. As a parent, what else can you do? I still start crying when I think about the pain machine and how hard it must have been for my parents to see me suffering.

Sick Kids put my back on my feet, walking without pain, on better meds and with some physio exercises to keep my range of motion strong. I was armed with knowledge, custom-made resting wrist splints with hot pink velcro and some hope that everything might be ok - at least for a little while.

Begin at the Beginning

I started having shoulder pain in the mornings in the winter of 1991 - not something I gave much thought, chalking it up to usual aches and pains of being a on the junior high school volleyball team. And then volleyball season ended, and my shoulders and wrists still hurt. Off to my family doctor I went and some physio was prescribed, ultrasound on my wrists. The first time I heard arthritis mentioned was by the tech performing the treatment and of course, I said I was too young. And I was, wasn't I?

My GP wasn't sure so he sent me to an internist who tested me to no avail for 3-4 months. Finally, after a trip to a lupus and chronic disease conference for teenagers in search of some answers, I felt confident that I didn't have lupus (thank God) but was convinced that his course of treatment - or lack thereof - was not doing me any favours. At the time I was on 8 aspirin a day, and then had to take medication for the minor ulcer developing in my 16 year old stomach. The ironies of taking medication for my medication.

At my appointment a few weeks after I got back from the conference, I demanded a referral to Sick Kids in Toronto (I lived in Brampton at the time). Picture a 16 year old demanding a referral for treatment. My mom sat beside me in silent support. With a bit of time and experience with the medical field, I have learned that all doctors are not created equal, and he didn't have a clue. It was an early lesson on being your own health care advocate.

That's how I found myself in a preppy button down cream and navy plaid long sleeved shirt with walking shorts and penny loafers (including the penny) at the Sick Kids rheumatology clinic with a diagnosis within 30 minutes. I remember exactly how I felt (and what I wore) in July of 1991 in the examining room with my parents. I was perplexed that in 30 minutes I could be diagnosed, when the internist had no clue after 4 months.

It was the day that shifted me, my life, my focus and my trajectory permanently. Certainly makes the top 5 worst days of my life, although at the time I didn't really see that. I was simply grateful that relief was in sight.