Month: April 2018

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.

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

just my luck

 

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.

Enter your email address to subscribe to this blog and receive notifications of new posts by email.