Prednisone Partners

June 27, 2007 at 1:23 pm (Uncategorized)

Jay hurt his back last week playing basketball. Given his history of lower back injuries (he ruptured a disc playing rugby in college) and the fact that his current episode caused pain to shoot down his legs, his doctor decided to act aggressively. In addition to prescribing various pain killers, muscle relaxants, and a non-steroidal anti-inflammatory drug, the doctor also gave him a week’s worth of prednisone to take.

Now, I am not one to rejoice in another’s suffering, especially when that suffering involves ingesting prednisone. I once heard a doctor describe prednisone as “the devil’s wonder drug.” It’s the perfect definition that embraces the humble corticosteroid’s contradictions. Prednisone carries with it a host of potential nasty side effects: increased appetite, water retention, loss of bone density, cushingoid syndrome (a puffy, moon face), increased risk of diabetes, insomnia, mood swings, and, in a lucky few, full-blown psychosis. The bitch of it, though, is that prednisone works – and does so cheaply. Doctors prescribe it for a variety of inflammatory issues: strained backs, sarcoidosis, adult chicken pox, severe asthma, and chronic sinus problems, to name just a few. I even know of someone who recently took two weeks’ worth of prednisone for a sore tooth.

Even though I was upset that my husband was in enough pain to warrant taking prednisone, I was also almost relieved that he was going to experience the drug that has been the bane of my existence for the past three years. I certainly wasn’t seeking company for my misery, but I was intrigued with the idea that my husband – the one who has been closest to my illness and the various treatments my physicians have lobbed at me – would finally get a chance to truly understand prednisone. As much as Jay empathizes with me for having to ingest a drug that has bloated me beyond recognition and that plays with my moods as surely as a concert violinist works the strings of a Stradivarius, the truth is that empathy and understanding, by necessity, stop short of first-hand experience. I wouldn’t have admitted even to myself that the prednisone prescription in my husband’s hand seemed like an opportunity for me to have a companion in my illness – not next to me holding my hand, as he always has, but in the thick of it with me.

It was pretty clear from the outset, however, that Jay’s prednisone experience would be different than mine. For one thing, he got a nice, pre-packaged week-long assortment of pills of various doses. I get giant bottles with infinite refills. His maximum dose was on the first day, when he took 24 mg., and after that he tapered down to 1 mg. on the seventh day. I, on the other hand, have been on prednisone for over three years. I took 40 mg. for about a year, and after patiently working my way down to 20 mg., I got stuck. Whenever I dropped below that amount, my disease flared. At last, with the help of Remicade infusions, I’ve dropped my daily prednisone dose to 10 mg. Assuming my good luck lasts, I’m supposed to now take one milligram less of prednisone with every Remicade infusion. This means, assuming I’m able to get my Remicade infusion regularly every six weeks, that I’ll go from my current dose of 10 mg. to the 1 mg. (which Jay accomplished in a week) in a mere 54 weeks. In other words, I have over one more year (best case) before I get off the devil’s wonder drug.

Even though Jay’s trip to Prednisone Land was short, it did give him a sense of the drug’s side effects. “I am so hungry,” he said, as he padded into the kitchen an hour after a big dinner. He ate an orange. And then he ate another orange. And then he ate a baked potato with salsa. “I’m still hungry,” he said incredulously. “Nothing I eat satisfies me.” A little while later he ate a trough-sized bowl of cereal, before he finally went to bed, grumbling along with his stomach that he was hungry. Ah, yes. That would be prednisone. I gained over 70 pounds taking it. After three months of dieting, I’ve dropped seventeen of those pounds, but I still am so hungry that I half believe I could eat my arm in the long hours between lunch and dinner.

A doctor once told me that the prednisone didn’t make me gain weight. All it did was increase my appetite. I succumbed to my appetite and ate the food that made me overweight. His point was that the prednisone didn’t make me fat, but that I had made me fat. I suppose this is true. But it did feel like he was intellectually sparring with me about the primogeniture of chickens and eggs, meanwhile kicking me in my metaphorical nuts. He had a medical degree, but obviously not much in the way of innate intelligence, since he really pissed off a fat woman with a giant appetite, who could have easily eaten his arm instead of her own. Despite my anger and my thoughts of cannibalism, my encounter with this doctor (whom I should have left one-armed for principle’s sake) left me wondering if I wasn’t simply weak-willed. But, then, seeing Jay empty the contents of the entire refrigerator into his mouth in the space of about three hours did my heart (and my self-esteem) a good turn. If my husband – a man who actually doesn’t like the taste of butter and who thinks a perfect snack is a grapefruit – is prompted by prednisone to eat three slices of pound cake, then maybe I wasn’t a fat, lazy slob. Maybe the prednisone did affect me.

I have never felt a hunger like that induced by prednisone. I’ve had plenty of opportunities to work up an appetite in the past. I’ve ridden my bike over a hundred miles. I’ve hiked close to thirty miles with only a couple of Power Bars for sustenance. For a period of two weeks in high school, I stopped eating breakfast and lunch. Once I got a terrible stomach flu that prevented me from eating for several days. But before I started taking those oblong, white prednisone tablets, though, I had never experienced hunger at such a voracious, ferocious, arm-eating level. Prednisone hunger is bottomless. You can put off eating in the name of self-discipline or weight loss, but you simply cannot get away from the wrathful hunger. Normal people (past incarnations of myself included) can distract themselves from their stomachs when they’re on a diet. Prednisone hunger brooks no distraction. When you’re not eating, you are either dreaming of food, plotting your next meal, or feeling your insides twisting and writhing as though some demon were down there stabbing them. When, at last, you say, “Fuck it,” and eat, prednisone hunger will not go away. Eat a cake, and you’ll think, “That was a small cake and I’m still hungry. Do we have any larger cakes around here?” Eat a side of beef, and thirty minutes later, you’ll be back in the kitchen, looking for the rest of the damn cow. Experiencing prednisone hunger feels like you’re throwing marshmallows at Godzilla. “You call this a meal?” Godzilla bellows. “Forget the fluffy treats. Get me a small city, and I’ll be sated.” So you feed your inner Godzilla Dayton, Ohio, but he consumes it (and its suburbs) in a matter of moments, and then just demands Tokyo or Mexico City. There’s no satisfying Godzilla, especially when he’s on corticosteroids.

Jay also quickly noticed the flip side to prednisone hunger – prednisone nausea. If you dare to let your bloated prednisone belly empty, not only will it grind its teeth and demand a jar or two of frosting (hold the cake), it will also make you painfully, horribly nauseous. If I take my prednisone pills on an empty stomach, I’ll be sick for the whole day. If I skip a meal, I’ll be sick for a while. I have dry-heaved up bile on countless occasions since I’ve been on prednisone. It’s as if my prednisone stomach digests every shred of food in 8.3 seconds, and then spends the rest of the day producing vast quantities of digestive acid. In summary: prednisone make you want to eat every thing in sight, all the time; if you succeed in mastering this hunger and not eating for every waking second, you’ll soon be doubled over the toilet, retching up an ugly liquid that sears your throat.

Prednisone doesn’t only lay claim to the realm of guts and food, though. Some of the drug’s most pervasive and troubling side effects are related to mood. Jay claimed not to have experienced any of the psychological side effects of prednisone, such as irritability, moodiness, insomnia, or depression. I won’t argue with him too much on this point, except to note that he was awfully grouchy for a week. I understand him. Who wants to admit that her state of mind – her very human nature – can be turned upside down by a handful of cheap pills? Not me. (And apparently not Jay either.) But the truth is that I am a different person when I take high doses of prednisone. Remember that seminal anti-drug commercial from twenty years ago? “This is your brain,” the voice-over intoned, as the camera zoomed in on an egg. “This is your brain on drugs,” the booming voice continued, as the egg was cracked and fried in a sizzling pan of oil. Maybe they could somehow include the commercial on the prednisone’s pill bottle warning label. At the very least, then you could dream of fried eggs when you get extra hungry and want to kill someone – a common emotional combination for my brain on prednisone.

Prednisone has done the emotional equivalent of take away my sea legs. Little swells, small hiccups of the ocean that I once considered a normal part of the voyage of life, now make me want to abandon ship, kill the crew, or else hide in my cabin with my head under the pillow. Everything bothers me. Small things make me so angry I literally can’t breathe. I’m ashamed to admit precisely how small: Jay rustling the newspaper, or not turning the key in the car ignition so that I can open my window before he messes with the stereo, or washing the dishes but not cleaning the sink. I almost strangled Andrew the other night when he drove his miniature taxi into my ankles. Other small things make me so sad I also can’t breathe. Any television show or movie that involves a sick or dead animal or child will leave me weepy for days. Small rejections (the daily diet of writers) make me want to stay in bed. Other oddly intense moods come and go. If my mother has a strange tone in her voice on the phone, I’ll worry all day. Is she sick? Is she upset? I spend inordinate amounts of time worried that people are angry with me. Occasionally I can muster the courage to ask the person, and they always give me a look like I’m a Martian. Usually, though, I worry in silence. Stress sets me over the edge. I – who was once a highly competitive athlete – can’t stand any kind of pressure. Deadlines for a volunteer assignment with a local charity left me actually sweating. I lay awake at night and fret about my disease, my prognosis, my death. Appointments make me nervous, even if it’s just to get my hair cut. Do I really want to do that? What am I giving up by going?

I think I do a pretty good job of hiding how terrible I feel most of the time. Sarcoidosis has left me feeling physically crummy much of the time, but I’ve become fairly adept at not complaining about the constant, aching pain in my hands and feet. Who knows exactly what portion of mental anguish is caused by prednisone, and what is the normal chemical soup of my own busy brain? Either way, I’ve applied the lessons I’ve learned with my body to my moods. I don’t want my three-year old son to spend years in psychotherapy because his mother spent his entire childhood either complaining about how awful she felt or acting angry, depressed, or weird.

I thought Jay’s time on prednisone would give him an intuitive understanding of the vicissitudes of my prednisone-addled moods. Maybe it did, but my hunch is that his most significant take-away message from prednisone is that the drug makes a man hungry. For Andrew’s sake, it’s a good thing that Jay finished his course of prednisone. Imagine two parents spinning on the surging tides of adrenalin the drug produces. We’d have to start saving for therapy now. Nevertheless, it’s hard not to be envious that Jay could simply stop taking the drug. Of course, I wouldn’t want Jay to have to stay on prednisone. I love him and would never wish suffering on him. Plus, we’d probably eat ourselves into bankruptcy.

But it was odd, after three years of going alone, suddenly to share this piece of my life in chronic town with my partner; it was odder still to feel a sense of connection over something as strange as a pill and the appetites and moods it brings; and oddest yet to feel a little lonely and bereft when he successfully tapered off the prednisone and I am left swallowing the same dose every day, counting the 54 weeks until my body will hopefully be wholly my own again.

Having Jay take the devil’s wonder drug made me feel less alone with my prednisone bottle. It’s silly, but it’s true. But it also, ultimately, made me feel more alone with my disease. It wasn’t solely a matter of Jay being able to stop taking the pills. Mostly it was because I thought that by the simple act of ingesting a pill, Jay would gain almost magical insights into what it means to be chronically ill. A sore back and a week’s worth of corticosteroids can’t convey the fears, feelings, and state of being that comes with being unwell in a healthy world.

I don’t think it’s a coincidence that Jay and I had one of our worst fights on Saturday, as he neared the end of his prednisone course. Like all meaningful fights, this one lurked behind silly surface causes – in this case, that I had felt obligated to have a dinner party on Saturday evening and that he had invited an extra family at the last minute. I love having people over and sharing our home. But I haven’t been feeling well lately. Cooking and cleaning for others is a lot of work, and adding the additional people only upped the pressure I felt. “I am not like you,” I screamed at him a couple of hours after our guests departed. “Do you know how much it takes out of me to do this?” Of course he said he was sorry, and of course we kissed and reconciled. But I felt the gap in our lives as rawly as your tongue finds the hole left by a tooth. He doesn’t understand how exhausting a simple dinner party can be for someone with this disease. Thank God he doesn’t. But he doesn’t.

“You have to tell me how you’re feeling,” Jay told me in the aftermath of our fight. “I can’t read your mind. I don’t know when you’re feeling bad, when you’re feeling up to having company.” He’s right, but explaining how I feel gets to be too much work. Maybe it’s easier to let a gap grow then to spend my days reiterating the mournful mantra of, “I’m tired. I don’t feel well. I’m hungry. I’m nauseous. I don’t feel well.” In the hidden folds of my mind, I had hoped somehow that by becoming prednisone partners, by both of us having to take the same drug, that we would become disease partners. Just as he would grasp the extent of the inner Godzilla hunger, so he would comprehend how the prospect of folding the laundry is sometimes enough to send me to bed, overwhelmed and worn out by daily life. I suppose prednisone would truly be the devil’s wonder drug if seven days of it could allow souls to elide. Would I strike that Faustian bargain? Would I let him succumb to hunger and depression for his thorough understanding?

I suppose it’s a good thing I don’t have that choice. None of us do. All we have are our hearts to share, our thoughts to express. There’s nothing magical about communication. I just need to say the words again: “I’m tired. I don’t feel well.” I need to say them even when it feels like too much work to utter them. I need to say them even when I wish they weren’t true. I need to say them even when speaking them makes me cry. Because otherwise I have no partner but the prednisone, and this relentless hunger inside me.

2 Comments

  1. Sheryl said,

    Oh my goodness do I relate to your story. I am on Prednisone for Auto Immune Hepatitis. I am so so so hungry. I have been on Pred for 2 months, have had just about every side effect there is and gained 20 pounds eating veggies and fruit, if thats not a slap in the face. I got a very good chuckle out of your story. Thanks so much for the laugh. I will always think of you when I need to smile. I am having a scope on my stomach tomorrow and then changing drugs to Imuran I guess. I hate Prednisone! as does everyone. Please dont ever hesitate to email me. I would love to chat.

    Sheryl from BC

  2. Jackie said,

    So is the an alternative to prednisone?
    I hate it too

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