I’ll Never Complain About Prednisone Again – At Least for A Day or Two

February 8, 2007 at 5:37 pm (Uncategorized)

Much of my life for the past couple of years has been shaped by sarcoidosis. I don’t like this fact, but it’s reality. My reality. I’ve gone from someone who couldn’t remember to keep my annual physical to someone who can fill out those doctors’ questionnaires in my sleep and administer my own neurological exam. I could probably start my own IV and run the MRI machine, too. When I was first diagnosed, it took me a good couple of months to memorize the name of my illness. “Sarc- something,” was how I thought of it until this odd word settled itself permanently in my brain. But now, my family and I have spent an inordinate amount of time and money tracking down “sarc-something” specialists, attending conferences about the disease, and researching it in libraries and on the Internet. I think I know as much about this disease as anyone else does, except for the “sarc-something” gurus. Not that this knowledge has translated into better health. Try as hard as we might, my husband and I end up making plans (or more likely canceling them) around my illness and the host of physical problems it carries with it.

Being sick involves losing control. You lose control of your time in the seemingly endless parade of doctors’ appointments and tests to monitor your condition. My calendar all too often looks like a fantasy of the American Medical Association with three or four appointments a week. Then, you end up losing hours, days, or weeks to the sickness itself. Sarcoidosis makes you feel lousy—always tired, achy, and ill. The medications to treat it inhibit your natural immune system, so you catch a host of ailments, ranging from colds to stomach flu to pneumonia, and every bug you encounter takes you twice as long to fight off. Sometimes even the tests to monitor your illness make you sick. I’m still reeling from the liver biopsy a couple of weeks ago. It was just another “routine procedure” that my body, weakened by both disease and treatment, struggled with. I ended up bleeding internally and in bed for over a week.

This week, I’ve been able to lose control in a whole new way. Since the illness – despite all the prednisone – seems to be having delusions of grandeur and wants to find new and exciting parts of my body to colonize (I feel like Congo after the arrival of the Belgians), I’ve started new medications. On Tuesday, I took my first dose of methotrexate, a drug first used as chemotherapy, which also works against autoimmune diseases. Then next week, since my tuberculosis test came back negative, I’ll start taking Enbrel (an injectible anti-TNF drug in the same family as Humira—the one I mentioned in my last posting. The doctors opted for Enbrel instead of Humira for me since Enbrel is faster-acting and also leaves your system more quickly if I need to stop taking it because I get an infection).

The flip side of losing control with an illness is convincing yourself that you haven’t. For me, rebelling against treatment helps me remember that there is a me apart from the drugs and the sickness. There is no such thing as a magic pill—a drug without side effects, and anyone who is seriously or chronically ill takes medications that, while therapeutic, have a host of lousy side effects. As I’m sure you’ve noticed, I have occupied most of my first three years as a sarcoidosis patient absolutely hating prednisone and what it has done to my body. I gained more than seventy pounds on that drug, and, while it seemed to control the sarcoidosis in my heart, it has done little to stall the disease’s progression in my joints and in other organs. I’ve always taken the prednisone as my doctors have directed, and I’ve always been grateful that it prevented the sarcoidosis from permanently damaging my heart. But this hasn’t stopped me from despising every one of those white pills. Really, it’s not all that different from an unhappy sap taking out his bad day on his wife, child, or dog. Sometimes, unhappiness and hate just needs a target. I’ve avoided beating my son or yelling at my husband. But I have hated prednisone.

That is, until Tuesday, when I took my first dose of methotrexate and spent most of the day thinking that if I moved a centimeter in bed—even by turning over—I would first barf all over the place and then instantly die. I was nauseous, and my head felt like it was being split in two. It was like the flu times forty. I am incredibly thankful that my parents encouraged me to stay with them when I started my new drugs, since my babysitter is in Hawaii and my husband is out of town for work. My parents have literally kept me alive for the past couple of days. Not only did my mother force me to choke down a few pretzels, but she and my father kept me from swimming away in a sea of hopelessness and helplessness.

“Crap,” I thought when I awoke this morning and the light still hurt my eyes and my stomach still felt like I was on a boat in a hurricane. “This makes the prednisone look good.” Prednisone did make me want to eat every minute I was awake, but at least it didn’t make me want to stop living too often.

I called the doctor this morning and made sure everything I was experiencing was normal. It is. Hopefully, I’ll get used to the methotrexate and then I won’t feel so bad when I take it every week. Hopefully. And hopefully the Enbrel won’t have a ton of side effects either – beyond, of course, the risk of multiple sclerosis, lymphoma, blood disorders, congestive heart failure, and life-threatening infections they warned me about. The real pisser is that I have to stay on the prednisone, along with the methotrexate and the Enbrel, until it’s clear the new drugs are working.

But, hey, who’s complaining? Not me. I’ve learned to be careful what you wish for in the realm of pharmacology. I asked to be given the opportunity to get off the prednisone. And now the thought prednisone by itself feels like a luxury—the halcyon days of yore when I had appetite and energy. Sigh. But at least I have a new kind of pill to hate.

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