Flummoxed (Part 2 of ?)

I find it super uncomfortable to read articles in scientific journals. Even articles about MS. Even articles about MS illustrated with lots of pretty graphs. Maybe…especially articles about MS. These are articles I have to understand as though my life depended on it. Because it does.

You know how some people publicly (and most people privately) grouse about how higher math is irrelevant for most of us after we get out of school—so why make students suffer? Well, I wish I’d paid more attention when I was taught statistics. Turns out, I need to understand them in real life. I wish I’d had a semester or so learning to become a fine print detective, that the teacher had made terms like  “de facto” feel like shiny keys to hidden treasures. I wish I’d not learned to gloss over any text in the form of an equation like this one:

IDPDrugversusPlacebo=100%(1(1IDPDrugversusIFNβ100)(1IDPIFNβversusPlacebo100)).

Because no one is going to tell me the stuff I am learning by reading research articles in Frontiers in Neurology. Stuff like: “Higher efficacy treatments exert their benefit over lower efficacy treatments only during early stages of MS, and, after age 53, the model suggests that there is no predicted benefit to receiving immunomodulatory DMTs (Disease Modifying Treatments) for the average MS patient.”

I admit, I haven’t been going to enough MS Society events. But all too many of them are paid for by pharmaceutical companies, who may have a conflict with informing you that, after you reach a certain age,  their drugs are no longer particularly useful. (Not to mention, some of their drugs are not particularly useful at any age.) I don’t know about you, but I know an awful lot of people over the age of 53 who are taking a DMT (Disease Modifying Treatment.) These treatments can cost in excess of $7k per month. Very few of these people seem particularly well. More than a few complain of side effects from their medications. What would they think about this article? Have they been enduring pills/injections/infusions that are doing them more harm than good? Have I?

I’m not going to be too hard on myself for having trouble navigating the facts as presented. At one point, I’d sent a link to my son, who majors in math and economics at Vassar. My heart leapt when he messaged me back. Then I saw he was messaging with a question, not an answer: “Does this thing have cliff notes?”

When Dr. Z returns my call, I am stuck on one particular paragraph, which distinguishes higher efficiency drugs from lower efficiency drugs. I notice the drug I’ve lost access to, Zinbryta, is classified as a higher efficiency drug. Whereas Tecfidera, the drug that is causing my skin to redden and prickle, is classified as a lower efficiency drug. I’ve downgraded! Nobody likes a downgrade. And nobody likes their skin to prickle and burn.

IMG_0124

Dr. Z tells me he’d gotten the picture my friend Monica had taken of my angry skin. I ask him if it looks like an allergic reaction. The fine print that came with the drug was very clear on one thing: “Do not use Tecfidera if you have had an allergic reaction, such as welts, hives…”

I want him to use the word, “hives.” Instead he asks, “Did you take aspirin thirty minutes before you took the medication?”

“Like you told me?”

“Yes.”

“No.” I hadn’t wanted to mask the effect of the drug. I’d wanted to know exactly what my body thought of it. The reaction had been fairly unambiguous, I thought. Didn’t he?

He says rash is a common side effect, one that would generally recede after the first few weeks, or could be averted entirely if I were to take an aspirin beforehand.

I counter that even if this was a side effect, and not an allergic reaction, I just wasn’t sure the side-effect of this drug could ever outweigh the benefits of a low-efficacy therapy.

He says, “You’re talking about that paper again. Let’s remember that you may not need a high efficacy drug at this point in your disease process. You might be past the inflammatory phase of your disease. But you are not out of the woods yet. I have patients in their seventies and eighties getting relapses. I wouldn’t want that to happen to you.”

I don’t want that to happen to me, either. I promise I would give Tecfidera another chance. I would try taking the aspirin 30 minutes before the drug, as he had told me. And wait and see.

 

Advertisements

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 follow this blog and receive notifications of new posts by email.

Join 269 other followers

just my luck

 

The Yoga Groove

welcome

My long time yoga teacher, Sharon Byrnes, just started two new classes for people with MS and Parkinson’s at her studio, The Yoga Groove. Today I was lucky enough to have a one-on-one with her, so I got to call all the shots.

My body has given me a pretty long to-do list. I’ve been wanting to take a class on how to fall since learning that I have severe osteoporosis. (I was so eager, in fact, that I showed up one month early to  “Free from Falls,” a class which will be offered by the MS Society starting March 6.)

I requested we work on fall prevention. Sharon started me working on transitioning through various yoga poses from against the wall, instead of from in the middle of the room, so that I could use the data from the wall to keep my shoulders, back and hips in alignment while moving from two feet to one foot and back down again. She gave me blocks, so I could safely extend my body and achieve more from each pose.

IMG_9420

foot drop

You will notice, in the second picture, that my foot droops down. Ideally, my foot and leg should be parallel to the floor. Ha. Ha. I know this is the Internet, but I’m still going to show it like it is. What you’re looking at is called foot drop. It’s an MS thing. When I’m tired, like I was this morning after treadmill and weights, I have to use extra effort to lift my right foot off the floor as I walk (or do yoga.) Foot drop has been a big culprit in limiting my walking. Until I got hand controls,  it even limited my driving.

I asked Sharon about foot drop. I’d seen what looked like a helpful video on YouTube…but I wanted to verify that the advice it gave was any good. Sharon watched me demonstrate what I’d remembered of the video, which entailed sitting in a chair, raising the foot, swiveling it in one direction over seven seconds, and then back in the other direction seven seconds…to be repeated over three minutes. She immediately made three suggestions: 1. to keep my ankles in line under my knees (I should know that by now!)  2. to use a resistance band (I tend to be lazy about adding props.) 3. to work out both ankles, not just the one that gives me trouble,  working right/left/right instead of working the right ankle exclusively.  Her suggestions affirmed what I have learned throughout the years: YouTube is no replacement for first hand experience from an experienced instructor.

She then got out a timer and had me tap my foot. I produced 28 taps in a minute, which was less than her 48, but not as far from the 32 taps per minute I should have for a goal.

After our session, I immediately texted my friend Monica, who is off having a grand time in New Orleans this week and couldn’t attend class. She wanted to know all about how to prevent foot drop. As Sharon remarked on my way out, students learn a lot from their teacher, but learn even more from each other. My one-on-one with Sharon was amazing, but I can’t wait for next week, when my peers will be there, too.

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

Join 269 other followers

Everyone Is Doing the Best They Can

The main perk of teaching is that I get to learn a lot from my students, who range in age from 18 to 96 years old. Last semester, one of my students on the younger end of that spectrum said something so profound, I’ve wound up repeating it to myself every day.  “Everyone is doing the best that they can.”

When I was that student’s age, I’d had the opposite response to those around me. I’d always been quick to call out posers, slackers and fools.

As the humiliations of my disease pile on, I find myself doing  many of the very things I’d formerly found inexplicable and utterly ridiculous. And that’s on a good day.

Take the treadmill. I’d never understood the point of it. As a writer, I’m fond of forward motion. You can’t do better than climbing a mountain to learn everything you need to know about a narrative arc. You can’t have a hero’s journey without setting off toward the unknown, somewhere beyond the horizon, preferably on foot, or at the oar. What self-respecting writer could prefer the tedium of walking or running indoors to the nonstop novelty of walking or running in the wild? Only a coward, or a terminal bore.

When my doctor discovered my bones are two standard deviations more breakable than the bones of a typical woman my age, she recommended I quit swimming — which she’d formerly lauded as the best form exercise — and instead try out the treadmill. She explained that I would have to submit to gravity if I were to ever have a chance at rebuilding my bones.

This is how low I have sunk: so far, the switch to the treadmill has been an adventure. My first day on it, I was grinning like a ninny at the novelty of elevating my heart rate. (Thanks to MS, I am confined to doing exercises at a rate that doesn’t raise my body heat: once the heat is on, the wiring in my brain blows out.) I only made it through five minutes. (And those last 35 seconds took some discipline.) I then tottered 15 feet to the ring of machines I’m familiar with—my toys!—and returned to my weight routine—low settings only, because strain could pop my retina. (Is this silly, or what?) I have since worked my way up to six minutes per treadmill session. And then I had my breast biopsy. I’d been planning to drive to the gym afterwards. Instead I was told to stay out of the pool (again?) and not lift anything over five pounds for that day. Theoretically, I could have driven to the gym for maybe six and a half minutes of treadmill, and the leg machines. Ha ha.  Instead, I opted to heal.

So yes, today, Gentle Reader, if you see a woman on the treadmill, she isn’t me. I ask you to see her as my student would see her. I ask you to assume that the woman on the treadmill is doing the best that she can.

Stay healthy!

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

Join 269 other followers

IMG_3573

Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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

Join 269 other followers

Relief

 

Happy note in my in-box this morning.

Lisa:
Please disregard that letter. It was denied because the lady I was speaking to marked to wrong answer-
So I spoke with a Dr. And and got it overturned. Your are approved and will be receiving another letter. Please let me know if you have anymore questions.

Thanks

K-

 

I opened this note from my physician’s assistant in the midst of a thirty minute phone ordeal with Humana; I’d tried talking to two operators with Kentucky accents and neither one  could find my account, even when I spelled my name with the military Alpha Bravo Chalie method.

I’d gone into this day prepared to be loving. Literally. I was carrying this quote around from activist Ruby Sales,  who said, “I love everybody in my heart. And you can’t make me hate you.” I was going to remind myself, no matter what happened, that Humana might be an evil corporation, but the people making up Humana are basically good. Oh well. That’s a nice thought.

And what was my take-away after the botched claim processing and  the phone ordeal?  Humana, I no longer think you are evil. You did, after all, approve my claim and I can continue taking Zinbryta. But from now on, I’m skipping talking to your basically good people and going straight to your website.

I am not yet an evolved human being who can withstand uncertainty…or being on hold.

Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

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

Join 269 other followers