My brother James called from his hospital bed in New Mexico to ask me to research cyclosporine, a potential treatment for his ulcerative colitis. He is weak and has lost more than thirty pounds. The beeping in the background means his IV system needs attention. I hold on while the nurses add steroids, morphine and the solution he gets his nourishment from.
As with Alzheimer’s, no one is sure what triggers ulcerative colitis. And although medicines for ulcerative colitis are more effective than those for Alzheimer’s, there are not a lot of studies about treating an acute case like my brother’s. This is probably due to the fact that most people in the midst of painful, severe, life-threatening ulcerative colitis attacks don’t volunteer for clinical trials.
I pulled up the prescribing information for cyclosporine, and sorted through the few articles I could find. I looked up terms I didn’t understand (“parathesia” is a tingling or numbness, “renal insufficiency” is a fancy term for kidney failure). I checked the size of the studies on cyclosporine for ulcerative colitis (small, with around 50 participants). I marked some pages, and made some notes.
Then I called my brother back. “Did I wake you up?”
“Cyclosporine is an immunosuppressant.” I was looking at Mayo Clinic’s site.
“Mmmmm,” he said. I think he already knew this.
“This potent drug is normally reserved for people who don't respond well to other medications or who face surgery because of severe ulcerative colitis,” I read to him. I flipped to a list of side effects I found in a study published in 2003. “Irreversible liver damage, kidney damage in 23% of patients, infections in 20%, seizures in 3%.”
“I don’t want that drug.” By then, he was wide awake. His doctor planned to start the cyclosporine within a couple of days if James didn’t get better.
The rush to research is a reflex action for me. But I don’t think all my compulsive research helped my father deal with his dementia, and I worry it won’t help my brother. I can only evaluate information from a layperson’s point of view. Am I influencing James and his wife Katya to refuse a treatment he needs? I’m getting an uncomfortable sense of déjà vu.
This is the way it goes when doctors and patients have to deal with a lot of unknowns. I was still thinking about this when the Alzheimer’s Research Forum posted a table called “What We Know, What We Don’t Know” for discussion and comment. Under the What We Know column, the editors listed research findings and achievements. There are 41 entries in the What We Know Column. But for every entry in the What We Know column, there is a corresponding entry in the What We Don’t Know column.
This makes me wonder if I should keep blogging about Alzheimer’s research, when there is so much “unknown.” But I think many of us want to understand what’s in the What We Know and What We Don’t Know columns when we’re weighing treatment options for various diseases. And who knows what we’ll find out about Alzheimer’s in the next few years? Maybe there will be a “breakthrough” discovery that really improves prevention or treatment.
Maybe this is what Donald Rumsfeld meant during a February 12, 2002 news briefing when he said:
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.
I’ll update you on my brother’s progress. In the meantime, maybe we need to add a third column to our tables: What We Don’t Know We Don’t Know. It’s that Rumsfeld column that keeps me blogging about Alzheimer’s.