January 31, 2007 at 12:06 pm (Uncategorized)

On Monday the sarcoidosis specialist I see in Philadelphia called to discuss the results of my liver biopsy and my arthritis, and to plot my treatment course until I see her again at the end of March.

When she first got the biopsy data from my doctors here in Montana, she seemed to want simply to increase my prednisone yet again to see if this would check the sarcoidosis that is currently flitting from organ to organ like a debutante circulating among dancers at a ball. But then she spoke with the people here who can testify to the bulbousness of my hands, ankles, feet, and knees. She also took into the account the significant amount of weight I’ve gained on prednisone, how hard it will be to shed those pounds on twenty-plus mg./day of prednisone, and how negatively this prednisone weight impacts my health. Then there’s the whole matter that my sarcoidosis isn’t being controlled on the 15 mg./day of prednisone I’m currently taking. My liver levels are worsening; my heart is thumping around in my chest like it did when the sarcoidosis was active in my heart; and my hands are close to useless.

Her recommendation was that I take a drug called Humira — pending approval from my cardiologist that the new medication won’t deleteriously effect my heart. Along with the Humira, I’ll need to take a low dose of methotrexate. I spent some time researching Humira, the brand name for a adalimumad, which is one of the anti-TNF drugs primarily used to treat rheumatoid arthritis. Humira is a synthetic protein, which, when injected weekly or every other week, binds to tumor necrosis factor (TNF), a naturally occurring protein that is essential to the inflammatory processes (in the good sense) of the immune system. TNF has been pinpointed as one of the bogeymen of sarcoidosis. In an immune system gone awry, over production of TNF plays a role in forming granulomae — the little blobs of white blood cells that cause such problems when your body makes them in places they don’t belong.

“So far, so good,” I thought to myself. “Humira sounds like a wonder drug. A magic bullet. A cure. Why haven’t I been happily injecting myself since I was diagnosed?” I wondered. Then I read the drug’s contra-indications and side effects. I learned that taking Humira makes you much more susceptible to serious infections, particularly tuberculosis. TNF is, after all, a key player in the human immune system, and the inflammation it causes is our body’s tried and true response to segregating and destroying the pathogens that cause tuberculosis, listeria, and toxiplasmosis. Given that I’d be taking Humira with methotrexate — one of the cytoxins (literally “cell killers”) that were designed as chemotherapy and work to treat autoimmune diseases by suppressing the immune system — it looks like I will be left with immune system of a premature, skinless frog, put in a pot of slowly heating water. But that’s just my perception.

Reading the dire potential consequences of taking Humira (the pharmaceutical companies’ equivalent of a skull and cross bones) reminded me that there are no wonder drugs. Humira was only approved by the FDA in December of 2002, which means that many of its long-term effects aren’t known. At least prednisone’s evils were a known quantity. With Humira and methotrexate, I’ll be waltzing off in the wild blue yonder of pharmacology.

I got pretty depressed after talking with my Philadelphia doctor and reading about Humira. But then, I had also gotten pretty depressed at the prospect of upping my prednisone and taking that drug indefinitely. What did I want? I suddenly remembered stories that my oldest brother Ken would tell me on long car trips to entertain both him and me (and also to distract me from my almost constant need to pee). He would spin a narrative in his best sportscaster voice about me competing in the Olympics in my sport of the moment (either figure skating or gymnastics), against all kinds of sinister, thuggish Eastern block rivals (this was the height of the Cold War, after all). I was always the “Little American” with a heart of gold, skating or tumbling to perfection against all odds. The fictional awards ceremony was where Ken’s story got interesting, though. A big brother wouldn’t be a big brother if he gave you a happy ending without some suffering first. So, he would name the bronze and silver medalists before pausing and slowly saying, “The winner of the gold medal, the champion of the world, is…” And then he would almost say my name, but he would add an extra syllable at the end: “Rebecca J. Stanfel—jio. “But wait, there’s been a disqualification,” he would say, as I sat, nearly hyperventilating next to him. “The real winner is Rebecca J. Stanfel—avitch.” And this would continue for about a half an hour. “No wait! She was disqualified too. The actual winner is Rebecca J. Stanfel—ding. No wait! Ladies and gentleman! Another disqualification.” Just when I was about to burst a blood vessel, Ken would let the real me, with no extraneous suffixes on my last name, win the event — and with no additional disqualifications.

After the latest round of sarcoidosis-related trauma — the routine liver biopsy that ended in internal bleeding and more than a week in bed, the disease cropping up in a new organ every other day, my medication options limited to “Really Quite Not Good” and “Hey, That One Sucks, Too” — I wanted resolution in the vein Ken had delivered over twenty-five years ago. After all, I’d been sitting on the edge of my seat with sarcoidosis for three years, just like he kept me preoccupied on endless drives. I had been enduring a medical version of all those disqualifications: “But wait! The disease is in your brain. No it’s not! But it is in your heart. Wait! It’s in your joints.” Now I wanted to get a magic telephone call telling me it had all been a mistake, that the Evil Soviet — or the Evil Granulomatous Disease — wouldn’t win, that, in the end, all of this turmoil and trouble had been a mistake and that the Gal With a Heart of Gold would triumph. “But wait! You actually don’t have sarcoidosis. We’ve been looking at Rebecca J. Stanfel—jio’s records all along. You are just fine.” No need to take prednisone or Humira or even an aspirin.

At this point, I don’t even know how to assess whether the potential risks of Humira are greater or less than the ongoing risks of taking prednisone or the risks that unchecked sarcoidosis poses to my various organs. Since it seems unlikely that I’ll learn this has all been a dreadful mistake, I’ll do what I’ve always done. Learn what I can, put my faith in the doctors I have chosen, and hope for the best.  Yikes.


  1. Cathy K said,

    Just remember, you have the disease, it does not have you. You are so much more than sarcoid. I dont know you, but i know this… you are a wonderful writer, you have a beautiful family and you have a courageous, honest, realistic inner voice that you share with all of us. thank you for doing that.

  2. rebecca said,

    Thank you for your kind and generous words, Cathy. It means so much to me that you are reading.

  3. AlexM said,


  4. Alex said,

    I found your site on technorati and read a few of your other posts. Keep up the good work. I just added your RSS feed to my Google News Reader. Looking forward to reading more from you down the road!

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