Just My Luck

Here is the pivotal shower scene in the story I’ve told myself (and my gentle readers) about my struggle with MS:
It’s 2005. I’m in my thirties. I’m in the shower. I’m in pain. I’m sobbing.
I’ve tried MS drug after MS drug. None have stopped, or even slowed, the progress of my MS. The disease has conned my immune system into attacking my central nervous system. Each relapse creates new symptoms. Some symptoms, like vision loss, have proven to be transient, but some symptoms, like the numbness and tingling in my feet, have proven to be permanent.
For years, I’d held out hope for a knight in shining armor to save me from disease progression—in the form of a trial drug called Tysabri. My neurologist at Yale New Haven Hospital had enthralled me with stories of MS patients in his Tysabri trial actually experiencing disease reversal. Naturally, I’d asked him to sign me up.
Just my luck—I was thrown in the placebo group. My MS got no better.
After the Tysabri trial, I was assigned yet another ineffectual MS medication. My MS attacks continued. My Kentucky neurologist informed me “a black hole” had formed in my brain.
By the time Tysabri finally got approved by the FDA, I not only felt I needed this drug: I felt I deserved it.
I got one infusion of Tysabri. And then came the bad news. Some patients on Tysabri had developed PML, a potentially fatal brain inflammation. Tysabri had been taken off the market.
I wasn’t sobbing in the shower because I was afraid of PML. I was sobbing in the shower because Tysabri had been taken off the market. I had lost my chance to get better through Tysabri, or to die trying.
That’s right: I was feeling so desperate that it seemed a perfectly reasonable option to die of PML and suffer no longer from multiple sclerosis.
If this were a love story, Tysabri would be The One That Got Away. I did what anyone does these days when The One gets away; I toweled off and got online to find a new target for my hopes and dreams. And just like that, the drama took an upbeat turn.
The researcher I discovered online actually did put me on a drug that would stop my MS exacerbations, and dramatically slow my progression.
When I joined the daclizumab trial, I didn’t have to lose any time in the placebo group. Eventually, this drug, too, got approved for the market. But eventually this drug, too, got pulled from the market, after being connected (perhaps rashly) to some deaths from inflammatory brain disease.
This time around, there has been no weepy shower scene. There are more fish in the (metaphorical) sea these days than there were in 2005. I have options.
One of those options has turned out to be Tysabri: The One That Got Away. Tysabri has been back on the market for a while, ever since a blood test was developed to gauge a person’s susceptibility to developing PML. When I last met with my neurologist, he suggested I take this blood test. If the results looked good, I would have the option to give Tysabri a second chance.
Cue the music.
I took the blood test. Usually, the results take a day or two.
My results took over a week.
Guess what?
I’m one of those people who is susceptible to PML.
Just my luck.
And I don’t mean that in an ironic self-pitying kind of way. I mean it straight up. For a person struck with a horrible disease, I’ve gotten a lot of fantastic breaks, even when events looked bleak at the time. Especially when events looked bleak.
Let’s look again at that pivotal shower scene.
If I’d known I had narrowly escaped PML, I may not have been crying in the shower. I may not have been as motivated to do the Google search that led me to Bibi Bielekova’s innovative research with daclizumab. I may not have benefitted from twelve years on one of the most effective MS drugs yet discovered.
In a few hours, I meet with my local neurologist, Dr. Z. He’s been at a great big MS conference in LA, hearing all the latest innovations in the field.
Together, we will try to pick the best option for me.
I’m feeling lucky.

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just my luck

 

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Risk Assessment

Dr. Z’s phone call got me out of bed yesterday morning. My local neurologist apologized for disturbing me at an early hour—but he knew he wouldn’t have any time to spare once he started his rounds for the day.
“It’s about Ocrevus.”
Of course it was.
I’d chosen Ocrevus at our appointment a few days before. I’ve been spoiled—I’d been on Zinbryta, one of the most effective drugs for multiple sclerosis out there, until it was pulled from the market. I didn’t want to downgrade. Ocrevus has an associated cancer risk; I’d asked Dr. Z if I could still consider it, even with the recent revelation of my elevated risk of breast cancer. Dr. Z had said the risk didn’t look too bad, nothing to inspire a black box warning; the numbers were more in the neighborhood of correlation than that of causation.
I’d left the appointment with greater clarity than I’d had walking in. Apparently, Dr. Z. left with a nagging feeling of uncertainty. And so he called the drug company (as only a conscientious doctor would do.) The company deferred answering his question, advising him to wait for their big product announcement in May. I am scheduled to get my first infusion in mid-April. Dr. Z thinks it would be reckless to start me on the drug without gathering all the information the company has collected about the drug through its first year on the market. He also thinks it would be reckless for me to wait additional weeks to get treatment. My last dose of Zinbryta was in mid-February. And my MS has proven to be fairly savage if left untouched by anything less powerful than a monoclonal antibody. He didn’t want me vulnerable to an MS relapse. He is a little too fond of telling me that I don’t have much brain left to lose.
Dr. Z suggested I try Tysabri next. Tysabri has been found to be fairly effective, though it comes with an elevated risk of PML, a potentially fatal brain infection. There is a blood test I can take to see if I’d be susceptible to PML. I don’t know which risk I will take if the blood test is positive. I risk a relapse if I hold out for Ocrevus and wait too long. I risk a relapse and potentially harmful side effects if I choose the wrong medication.
And yet, I am cautiously optimistic.
His phone call confirmed I’ve made one good choice already: I’ve chosen a neurologist with integrity. I also have a great resource in my neurologists at the NIH, who throughly answer my questions every time I find myself at a crossroads in this perilous landscape of multiple sclerosis. These researchers are working to make decisions like mine less agonizing. That’s a worthwhile cause, indeed.

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What’s Wrong With This Picture?

Bad Decision

Yesterday my friend Monica and I went kayaking on the Miami River. When you read, “kayaking,” you might get the impression we were paddling madly. We were not. We were just two women of a certain age, bobbing along on a still lake, dipping our paddles occasionally as we chatted.

Monica and I met at a yoga class for people with MS. We’ve both had MS symptoms for decades. We share the same neurologist, Dr. Z. MS gives us a lot to talk about. I told Monica how much I admired her decision to stay away from MS medications, despite Dr. Z’s recommendation to start one. I think she’s been managing her disease really well. Monica runs her own business. She can hike for miles. She can drive without hand controls. She can put on a sneaker while standing on one foot. If I could do those things, I’d consider myself pretty well cured.

Monica told me she admires me for being brave enough to try experimental medications. I assured her I haven’t been brave, only desperate.

I would be oversimplifying to present us as taking opposite tacks. If you were to draw a Venn diagram of our approaches to MS, you’d find a pretty big overlap in the center. We both do yoga. We both experiment with controlling MS through diet; me in a clinical trial, and Monica in the privacy of her own kitchen. We are both total strivers, still hoping to get healthier, not sicker, as though we weren’t aware we have a degenerative disease. What’s our secret? Delusion, we agreed, laughing. Every day, we push forward, not necessarily ignoring the bad stuff, but not letting that stuff define us either.

When I observed that we’d been under the sun for a while, we paddled over to a shady spot, being the proactive types who wouldn’t ignore the sun and overheat, thereby triggering our MS symptoms.

Monica took a picture of me in my rented kayak, wisely sheltering beneath an overhanging tree. I’d made a good decision, right? Nope. I’d made a bad decision. This morning I’d woken up itching.  Turns out, I’d been nestled in poison oak. I’m not saying I would have been better off heating up in the middle of the lake. But maybe I should have chosen to not shelter quite so deeply in the shade.

Here’s the thing about living with MS in these times: there are many treatment options to choose from, including the option to not medicate. Smart, conscientious people can labor over these options for days, or even years, yet make a choice with grim consequences. When I was a little kid, I used to think I’d eventually recognize the bad option when I saw one. Boy, did I underestimate the complications of this world.