Flummoxed (part 1 of ?)

I took my first Tecfidera pill one week ago after dinner. About three hours later, I sat up in bed next to my soundly sleeping husband: it felt like I was wearing a prickly cap of molten lava. I sat there very quietly for a hours, a red-hot target,  wondering what to do.

Dr. Z did say that “facial flushing” was a common side effect of the drug. He had suggested I take an aspirin thirty minutes before taking Tecfidera. But had I done that? No. I had a rationale:  I always plan on not getting the listed side effects. I am as suggestible as the next person, which is to say, wildly suggestible. I try to compensate by kind of not paying attention to the fine print until I have to.  I have enough going on with my health without taking on any unnecessary burden of invented symptoms. By this semi-logic, taking an aspirin would have been given too much credence to a possibility of a side effect I’d rather not invent. Alas, I got the side effect anyway.

And then some.

As I sat there, sweating, burning, I thought, This cannot be good. Nothing feeds the demon of multiple sclerosis like elevated body heat. It makes symptoms leap into action like bacon grease on skillet. I realized I hadn’t even asked about the mechanisms behind how the drug worked. What if it didn’t work for me at all?

I was aware—and you may as well be aware, too—that MS drugs work less and less effectively as a patient gets older. I used to suspect that the daclizumab which had worked for me so well for me as an infusion in my thirties was simply less effective in the Zinbryta formulation I injected in my forties and at age fifty. But no. As it turns out, my cells were getting less effective. Here’s a link to a paper that illustrates it all beautifully. The paper is an easy read if you are fluent in statistical and neurological terms. Which I am not. But even I can read a graph with a steady downward angle and notice there aren’t even many people my age in MS drug studies to begin with. And when we are present, we make the results look a lot less spectacular. Long story short: If you want an MS medication to work at its best, be younger.

I wasn’t getting any younger. The new pharmaceutical options invented during my twelve years on daclizumab were turning out to be mostly inaccessible to me. My elevated antigen, and the associated higher risk of potentially fatal PML,  eliminated many of the new high performing drugs.  My elevated cancer risk eliminated Ocrevus, the only drug with promising results for people with progressing multiple sclerosis. Yes—I’d learned in an email from Dr. Bielekova that I am progressing. She’d written:

We also know much more about FDA-approved MS drugs in general then we knew when we met: these drugs are not a cure. Their efficacy is highest when they are started very early on in MS, but declines afterwards. They do not penetrate well into the brain tissue, where the inflammation hides. This type of inflammation we call “compartmentalized inflammation” and it is not inhibited by current MS drugs. You have some of this compartmentalized inflammation.

It had been validating to read that. I’d known it was getting more difficult to function, even as the MRI’s failed to reveal any new lesions. I’d known…deep in my cells, I guess, that those MRI’s weren’t telling the whole story.

And I knew, as I sat there and burned, that Tecfidera wasn’t going to do a thing for the compartmentalized inflammation caused by this latter phase of MS. At best, it would fend off the cruel, lesion producing exacerbations of my earlier phase of MS. It has been years since I’ve had to contend with one of those. But as Dr. Z put it, I was “not out of the woods yet.”

I’d been, briefly, on Dr. Bielekova’s trial of drugs that could possibly address the compartmentalized inflammation, but I’d had to withdraw from it once Zinbryta got pulled from the market. I could not return to the NIH (National Institutes of Health) until I started a new medical regimen. As the sky lightened, and the burning receded, I was thinking Tecfidera would not be the drug for me.

How did I wind up dutifully taking my next dose of Tecfidera that morning after breakfast? What persuaded me to give the drug another chance? I don’t believe in giving drugs a chance—not if they come with side effects. Back when Avonex came on the market in the ’90’s, I promised my then-neurologist I would give the drug a full year. I stopped breastfeeding my son to go on that drug. Those weekly Avonex injections gave me “flu-like symptoms” of fever and bone ache that lasted half the week. For my troubles, I got two severe MS exacerbations before that first year was through. I quit after the second exacerbation. The bone ache plagued me for years afterward. I’d felt like such a sucker.

Nothing happened immediately  after I took the pill. I played with my dogs, pulled some weeds, and went to yoga. My friend Monica and I were halfway through lunch when I asked her if my face was getting a little flushed. She said, “Now that you mention it, you’re bright red.” As we were leaving, she asked if I thought I could drive home safely. I said I’d be fine. But once I sat in the car, I looked down and saw my legs were red. I  ran across the parking lot, rapped on her car window and asked for a hug. She was out of her car in a flash.

Monica noticed my legs were “a funny pattern.” I will spare you the photograph she took. It matched the photo Google gave me when I typed in “hives.” I’d remembered the information packet explicitly said not to use Tecfidera if you have an allergic reaction. This looked like an allergic reaction to us. Monica insisted I call our neurologist, insisted on remaining by my side. She stayed with me as I left all the information with the clinic. Then I went home, and went on a research tear. By the time Dr. Z. called me, maybe a scant hour later, I was toggling between screens on my computer: my medical records,  the Tecfidera Facebook page, the Important Safety Information page on the drug site,  two challenging articles in the Frontiers in Neurology site. I was overwhelmed. Flummoxed.

Was what I had a side effect, or an allergic reaction? And did it really matter? My body didn’t like this drug. Twenty plus years of yoga and even more years of multiple sclerosis, had taught me to listen to my body.  Yet there was too much at stake to respond with mere intuition. I was eager to listen to my neurologist.

 

 

 

 

 

 

 

 

 

 

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just my luck

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A New Chapter Begins

Before I took my first dose of my new MS medication, my husband thanked me for making a wonderful soup. “If you die, you’re leaving on a high note.”

If anyone wants to snatch a loyal husband after I go, you should know the wonderful soup has a base of two cups of last night’s leftover fish soup from the local Chinese restaurant, one diced green onion, one cup of  home made bone broth, one can of full fat coconut milk, one cup of assorted frozen Costco fish, one teaspoon of pulverized ginger, a sprinkle of turmeric, half a cup of dulse,  and one other secret ingredient I won’t reveal because my husband said it was “comforting.” I want him to miss me just a little.

And I don’t want him to have to miss me quite yet.

To that end, I picked one of the MS medications least likely to provoke a fatal case of progressive mulifocal leukoencephalopathy (PML) because I love our life together very much. (That same life I once found so cursed by disease way back when I was objectively far less disabled than I am today.)

My local neurologist, Dr. Z., said that this is the drug he would choose for himself or his wife. There’s no stronger recommendation than that.

I am giving Tecfidera a shot. Thankfully, it comes in pill form.

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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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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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