Teetering on the Edge of TRAP-MS

On my most recent trip to the NIH, I was hoping maybe I would be disqualified for the TRAP-MS study, which evaluates four existing FDA-approved medications for their potential to reverse progression in multiple sclerosis.  I don’t like that I have disease progression, and therefore qualify for the study. But if I am someone whose MS is progressing, I like the option of being first in line to take an FDA-approved medication that might help.

This was my second six month check-in to establish a baseline on my status with my new MS drug, Tecfidera.

Before I flew out, Dr. W, my NIH doctor, told me there was a  chance I’d test out of the trial, since I didn’t have much progression to medicate.  I wasn’t as optimistic about my lack of MS progression. My fall this January didn’t just fracture five bones in my face—it fractured all the routines I’d set up to live as healthily as I could with MS. I’d only just started going back to the gym. I hadn’t yet returned, wholeheartedly, to the Wahl’s-ish diet I’d been following.

During my summer exam, Dr. W had clucked at my balance— “your balance is shit”—and the lack of resistance in my right leg:—“so weak.” What would my balance be like after two months of not daring to challenge it? What would my strength be like after two months of barely any dog walks and zero visits to the gym? Thankfully, this setback didn’t prompt an MS relapse. But if there was going to be a time when my MS might be progressing, it would be now.

I’d been instructed to “take it easy” before my clinic visit. But that morning, I had pushed myself to the verge of immobility.

As I entered Building 10, my spirits rose.  Maybe it was the profusion of plants, or maybe the profusion of people. IMG_1374I noted there was new art on the wall.

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I noted there was still no additional entry in the display of Presidential Visits.

IMG_1380Luckily, the first appointment on my schedule was at Phlebotomy, which involved sitting, first in the waiting room, and then for the needle. That gave me some time to recover from all the walking I’d done through the airports, the Metro, and the NIH campus.

When my number was called, I got the same needle master as I’d drawn on my visit the previous summer. I recognized the fan letter he’d posted about his ability to make a two year old smile while drawing his blood.

IMG_1337 2The testimonial hangs strategically at eye level of the person waiting to get their blood drawn. It is terribly effective at arresting any impulse to cower or cringe. Nobody wants to come off as a bigger baby than a sick two year old.

Did I, like the sick two year old, leave smiling after having my blood drawn? I doubt it. I’ve not been known to smile until after I’ve had my second breakfast.  I soon discovered that my favorite cafeteria—on the second floor in the new building—was closed for remodeling. I found my way to the alternate cafeteria in the basement of the old building. I loaded up on greens and root veggies and proteins. The meal provided all the rejuvenation I needed. By the time I stepped off the elevator on the fifth floor and rounded into the clinic, I no longer had a limp.  Seeing Diane, a nurse I’ve known since my first NIH visit, put me in the mood to smile.

Since returning to real life after my big fall, I’ve become accustomed to being greeted with “Your face looks good!” If I chose to take “looks good” as meaning anything more than “not permanently damaged,” it is because I latch shamelessly onto the positive.

Diane obviously didn’t get the memo about the five facial fractures. Instead of saying, “Your face looks good!” she greeted me with a hug and a frank assessment. “We’re getting old!”

True enough! I, for one, don’t mind looking (or getting) old. I’ve earned my silver stripes. Besides, those strands provide an instant, socially acceptable explanation for a slow or unsteady gait. It’s not that I am MS closeted—it’s just that not every distressed person stuck behind me on the staircase really wants or needs an explanation of the ravages of autoimmune disease when an assumption about the ravages of age will do.

Diane didn’t look any older, and I told her so. Diane is remarkably stable. She just doesn’t change. Case in point: the day I met her, she had just won a prize in a weight-loss competition between nurses on her floor. Here’s the catch: Diane had won by losing a mere pound and a half.  If Diane has had any weight fluctuations since then, they have probably been within the same range. Diane has had the same haircut as long as I’ve known her: same bangs, same color, same length. Diane stays Diane. I wouldn’t want her any other way.

Jen, the other dear nurse I’ve bonded with from the start—swooped in to agree with Diane’s assessment, “We are getting old!” as she grazed my cheek with a kiss. Jen’s hair was red that afternoon—her hair is a new color, a new style, every time I see her. Jen tends to pretend she’s disorganized or absentminded or late. True to form, she crafted an overly-elaborate explanation for why she couldn’t linger as she dashed off down the hall on her sturdy Doc Martens.

Diane wondered aloud, “How long have you been coming here, anyway?”

I guessed, “Maybe nine or ten years.”

Diane pulled up my file.  “Since 2010. Nine years.”

When I’d first come to the NIH, I’d been chasing daclizumab, the only drug that had managed to stop my MS relapses.  After the NIH had requisitioned all the supplies of it, I was more than grateful that there was room in the trial of the drug for me. For the three years of that trial, Diane and Jen had taken my weight and my blood every month. Once that trial was over, I was permitted to continue to take daclizumab though the NIH “safety study” while we all waited for the FDA approval. I flew in every six months for monitoring and new drug supplies. Once the drug was approved, we took what may yet be a final group photo.

IMG_4207Thanks to TRAP-MS, we were back together again.

While Diane was at her computer, she got a notification on my labs. She scrolled down two screens of data.  “Your labs look good.”

I thanked her, and told her how, the last time I’d visited, I gotten my lab results on my phone just as I was about to get on my departing flight. The cholesterol was marked in red, and looked way high. I was freaking out that the diet I was on was going to give me a heart attack. Doctor Google hadn’t been much help.

“Stay away from Doctor Google. You should call us when you have a question.”

Diane scrolled up, “Your good cholesterol is what’s really high.”

Then Linh, one of the graduate students, stuck her head in the office. She was ready to give me my tests.

We started with the timed 25 foot walk. Considering I had been limping just an hour or so earlier, I wasn’t optimistic about the outcome. Still, I’ve been conditioned to give these tests my all, so when it was time to march from one masking tape line to the other, I barreled along the hall like I was on my way to lift a screaming baby out of a vat of boiling water. Then I turned around and barreled right back. My fear of falling paled in comparison to my fear of failing. I did not fall.

I announced, “My healthy appearance is a flimsy veneer.” Like the NIH don’t know that. Test by test, I went all out, competing with my better-rested summer self.

As Dr. W. examined me, she seemed gentler than last time. She didn’t push as hard for the resistance tests. She didn’t chide me for being weak. When I messed up on the heel-to-toe test, she let me re-take it. Twice. Not that I did any better.

Overall, Dr. W was enthusiastic about my condition. She told me maybe the rest I’d had was doing me some good. Or maybe the Tecfidera.

When Dr. W. called a few days later with the results of my visit, she assured me the MRI looked stable. She told me I’d actually performed better on some tests, like the peg test, than I ever have. But overall, my numbers still nudged a bit in the direction of progression. As long as there is a progression of my disease, I will continue to qualify for the study,

Dr. W wished me luck in getting disqualified from the study when she sees me next time in six months. As much as I love this crew, I would love to be too healthy to see them.

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Life Isn’t Fair

I am currently enrolled in the TRAP-MS trial, which tests four FDA approved medications as potential supplemental medications for people with Multiple Sclerosis (MS). My appointment was originally scheduled for January 3, but as it turned out, I’d had to delay this follow-up twice—once because of a nasty cold, and once because of a nasty fall.

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At 5:35 on the morning of my twice delayed visit, I rounded a curve on I-75 South and was greeted by a dense array of taillights. Oops. I hadn’t planned on a traffic jam so early in the morning. There was no way I was going to make it to the airport within the recommended sixty minute buffer before my seven am flight. I was mortified. Would the NIH have to cancel yet another flight? I’d heard the NIH doesn’t get charged for flight cancellations. I stayed in my lane and hoped for the best. After a tense twenty minutes, the traffic jam dispersed, and traffic returned to normal. I made it to long term parking at ten after six. I still had to take the van to the airport. When I approached the kiosk, I had little expectation that it would produce a boarding pass. On a previous trip, I’d been denied a boarding pass for being a mere two minutes late.  Just for the heck of it, I entered my confirmation code and—surprise—received my boarding pass. I joined the line to security. The line was not a line. It was a serpentine labyrinth the likes of which one usually encounters on the holidays, not on an early morning weekday. Lines are not my thing. I know they aren’t anyone’s thing, but since multiple sclerosis, my legs tend to get super tingly and ornery if I stand too long. This line, however, moved just enough so I wasn’t standing, just walking very very slowly. My legs have become all too fond of walking very very slowly, so they didn’t tingle overmuch. They didn’t collapse. They cooperated. For that I was grateful. A modicum of gratitude can work wonders on the body. Security went smoothly—I wasn’t asked to take off my sneakers. I chose to walk to Concourse B instead of waiting for the tram, and as it turned out, my unruly legs got me to the Concourse B escalator maybe 30 seconds before the tram. At that point, even a 30 second increment counted. I was the last passenger to board the plane. By far. My seat, 5B, had leg room to spare. Not only that, I was the only passenger on this flight with no seat mate. While I was by far the most delinquent passenger, I’d wound up with the best accommodations.

Life isn’t fair.

IMG_1354We made it to our destination early. I wouldn’t have to wait for the 10:30 van to the NIH. I could easily make the 8:30.

IMG_1353I consulted my email from the travel office, which instructed me to wait on level three between doors 5 and 6—on the far end of the airport. As I hustled in that direction, a uniformed agent asked me for my destination. When I said, “The NIH,” he directed me to wait between doors 3 and 4. I hesitated. Which to believe? The travel office or the guy on the ground? We locked eyes for a second. I figured that if I picked the NIH instructions over his word, I couldn’t come to him for help later. I showed him the instructions on my screen. He muttered, “Then do as it says.”

There was no one waiting between doors 5 and 6. I figured, if I’ve chosen wrong, I’ll at least be able to spot the familiar white van with the NIH logo as it passes—and possibly manage to flag it down. 8:30 came and went. I reminded myself that traffic in DC was even less reliable than traffic in Cincinnati—who was I to get ruffled if the van was late? A professional looking man—perhaps a doctor?— approached timidly—perhaps wondering if this was where one waits for the NIH shuttle. And then he scurried away, with an air of private mortification. That was the only time I took my eyes off the road. Was it then that the NIH shuttle went by? Or had the shuttle indeed been late? At 8:42 I called the travel office, just to check. They told me the shuttle had arrived on time between gates 3 and 4. They were unimpressed by my complaint that I’d been instructed to wait between gates 5 and 6. I still had the option of the 10:30 shuttle.

At this point I could go back inside the warm airport, get off my feet, and maybe write an entry for my long neglected Ms. Lab Rat blog. On the other side of the road, the metallic Metro streaked by. The NIH van had let me down once already. I chose to give the Metro a try.

The NIH has its own Metro stop. In the past, I’ve used it to optimize my visits, dashing off to a museum, or the zoo, if given a wide enough stretch in my schedule between a clinic visit and an MRI. I’d never had the occasion to take the Metro from the airport, because in the past, there had always been a cab waiting for me. This was my first visit since the research got shuffled to a different department within the NIH, and this department was stingy. It wasn’t paying for cab rides, or food stipends, or hotels, and probably wouldn’t reimburse my measly little Metro fare.

I didn’t care. Taking the Metro seemed a better proposition than loitering in the airport. I found my way to the station where a Chinese gentleman guessed I was in search of the map. I thought of my son, an American who lives in Beijing and has probably been assisted once or twice at train stations by helpful Chinese gentlemen. I saw that my commute would take only 44 minutes and would involve only one transfer, which confirmed my hunch that I’d made the right decision.

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I loved the ride on the DC Metro, loved the long Deco-like escalator that opened up to the regal white stone NIH station.

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I was in too good a mood when the NIH security guard handed me my temporary ID and asked, “Do you know where you are going? Do you know how to get there?”

I answered, “Yes.”

I should have asked, “Where do I wait for the shuttle?”

I had many memories of walking from Building 10 to the Metro stop. But on this day, I would build a new memories. A memory of getting about halfway to Building 10 when I started to limp. A memory of waving urgently at the campus shuttle, which drove on by.

Life isn’t fair.

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A Day in the Life at the NIH Triali

Nothing ever goes exactly as planned in the NIH. This is an observation, not a criticism. Sometimes, a change in plans works to my advantage. When my husband and I arrived promptly for my seven a.m. appointment, I was told my eight a.m. MRI would have to be rescheduled. There weren’t enough technicians. My husband and I are adept at such situations. My body’s fickle insurrections have given us plenty of exposure to the changing of plans.

My first appointment was to review the revised consent form with the magnetically charming nurse Naomi. Within five minutes chatting over the forms she’d told me enough about life in DC for me to recommend Chimamanda Ngozi Adichie’s novel Americanah. As it turned out, Naomi had read that book and loved it, loved it so much she’d read it non-stop through a red-eye flight to Dubai, forgoing in-flight movies, forgoing sleep.

It was Naomi’s job to inform me that I would not be getting better care at the NIH than I could get at my local neurologist. I adore and admire my local neurologist. But I ask any of you with MS: does your neurologist have time to assess your condition for four hours? The level of care just does not compare. And more importantly, my visit to my local neurologist is designed to help only me. An NIH visit is designed to help multitudes.

Naomi told me I might be eligible to be paid $200 for my spinal tap. (There is usually no payment involved in a clinical trial, just reimbursement for food and travel.) I was open to this change of plans.

After I saw Naomi, I saw Dr. W. The last time I’d seen her, she’d been displeased by how easily she could push against my leg. She’d uttered one syllable, “weak.” I’ve been working  on my leg strength ever since. This visit, I gave her sufficient resistance. But she simply gave me a new area to work on. “You have shitty balance. You can improve that. Practice!” I’d improved my strength. You can bet I’ll improve my balance

Dr. W proposed a change of plans even more extravagant than Naomi’s $200 compensation. She noticed I’d just had a spinal tap the year before. She consulted the timelines of the studies I’m in, and declared I wouldn’t have to have a spinal tap this year, after all. This piece of news was an order of magnitude more exciting than the prospect of a spinal headache, and two hundred bucks. “I am your advocate,” she declared. We fist bumped.

Next came  the auxiliary scales. I performed the same battery of tests I always do—I did worse on some, better on others—all in all, it seemed a wash. Dr. W will be calling me next week when the data is in.

Further updates on this visit will have to wait until tomorrow. I am tired, my legs are crawling with electric pain, and my husband and I are planning to get up early and take the Metro into DC tomorrow to visit a museum.

Thanks for reading!IMG_0049

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Why Do I Always Opt to Join the Trial?

You can always rely on me — to join a clinical trial. If there’s a choice, say, between starting an MS diet and starting a clinical trial of an MS diet, I’ll opt to join the clinical trial. (I still regret that diet trial.)

When Dr. W told me I’d have to stay on an MS drug to be part of the TRAP trial, I didn’t consider dropping the TRAP trial. I went right back on Tecfidera with nary a reservation. I was finished with being flummoxed. My reservations about Tecfidera were suddenly forgotten—like my initial reservations about the TRAP trial.

When I’d first seen the letter from the NIH addressed to me as a candidate for the TRAP trial, I’d thought — no, hoped — they had sent it to the wrong person. Because this was a trial for people with progressive MS. I didn’t have progressive MS. I had the sportier version of MS—relapsing/remitting—and I hadn’t relapsed in years. I was a success story. Wasn’t I?

At that point, I had just joined the Wahls Diet trial. I intended to eat my way out of MS. And of course, since I was doing this dieting through a clinical trial, and not through a cookbook, this meant the outside world, including the NIH, would benefit from the data I’d contribute as I healed myself, one cup of veggies, one sprig of seaweed, at a time.

Well, over one thousand cups of veggies later, I have come to accept that I have progressive MS. This doesn’t mean what I’d thought it meant. Apparently I can still pass as able-bodied. (I got some affirmation just an hour ago, when my husband and I were out walking our dogs and a neighbor made some comment about my power-walking with my trekking poles. She and her husband were genuinely surprised/alarmed when I told them I was using those poles because I have MS.)

The progression of my MS might still be invisible on the outside, but MRIs detect gradually worsening brain atrophy. Lumbar punctures detect the breakdown of the mitochondria in my cells. I detect, in a myriad of subtle ways, that I am moving with greater difficulty through the world.

Current MS medications address one aspect of MS — they are measured in their ability to prevent relapse. They do nothing to address the brain atrophy and cellular damage that accrues over the years. The researchers at the NIH want to address all aspects of MS. The TRAP trial looks at four medications that might work to supplement the treatments that are already out there. Pioglitazone, Montelukast, Hydroxychloroquine, and Losartan have already been FDA approved for other diseases, and may have properties that could assist against MS.

In the future, MS patients may take multiple drugs instead of just one, much as AIDS patients do today. And while I am not jumping up and down for joy at the idea of us MS patients adding more drug burden to our already overtaxed bodies, I am even less willing to add more disease burden to my already overtaxed central nervous system. If I need to take an MS drug to be a part of the TRAP trial, I’m willing to stick with Tecfidera. The drug I’d be paired with, Montelukast, aka Singulair, has been shown to rejuvenate the brains of old rats in clinical trials. This old Lab Rat wants to give it a try. I could use some rejuvenation.

The funny thing is, I don’t have to rejoin the trial to take Montelukast. I could go to my GP, who likes me well enough, complain of a runny nose, and get prescription for Singulair. With the NIH out of the loop, I could skip taking Tecfidera, not to mention all those MRI’s. I could do my own brain hack.

Why don’t I? The same reason I don’t do my own plumbing. I need the best minds I can find to keep me out of deep shit.

In this trial, the researchers are going to see if they can get the same cellular information from tears as they do from spinal fluid. No more lumbar punctures? Now that’s progress—the good kind.

I Quit Tecfidera. Until I Quit Quitting Tecfidera.

I have a long history of quitting. I quit cigarettes decades ago. At least a dozen times. When cigarettes hit the intolerable price of $1.30, I reached my tipping point. I never bought another pack. From what I hear, cigarettes are considerably more expensive in the 21st Century. My being a quitter must have saved me a fortune.

When I reached my tipping point to quit Tecfidera, it had nothing to do with money. Thankfully. My copay was $0. No one should have to quit an MS drug because they can’t afford it.

My quitting Tecfidera had nothing to do with any conviction I can beat MS through exercise and diet (see photo of my Monday morning breakfast: spinach, husband’s grilled swordfish, asparagus, onion, radish.) I’m doing everything I can, but I don’t expect any cosmic reward. As my dad often says: Life isn’t fair. Chances are, Gentle Reader, you breakfasted on something like half a bagel with cream cheese —foods I’ve  forbidden myself from eating—and your immune system merely thanked you for it. My immune system may have thrown a hissy fit over such a meal. Or not. I’ve past the point of taking such a risk.

I quit Tecfidera because I didn’t understand how it worked, or if it worked, or if it would work for me. (Thank you, A., for researching the chemical processes.)  I could tell Tecfidera made my skin furious if I didn’t take an aspirin first. I avoid food that makes the MS monster mad. Why would I take a drug that makes the MS monster mad?

I quit Tecfidera because every time I considered I might quit, I felt at peace. The rest of the time, I felt…flummoxed.

So I told Dr. Z  I quit. I told my husband I quit. I told the drug company I quit. Nobody gave me any guff. Then I called the NIH.

You’ll need some backstory. I’ll be the first to admit I am a terrible blogger. For years, I’ve ignored basic blogging etiquette, such as adding a photo to a post, or including a provision for comments. For a long while, I’d let my domain name lapse. I could never be bothered to comment on MS blogs that I find inane and boring. Or even comment on ones I find fascinating. I dropped out of Facebook, so I no longer pulled in those followers. Gentle Reader, it’s a wonder you made it here at all. You must have a genuine interest my story, and I thank you. Which is why I apologize for having violating a basic norm in storytelling, which is to tell a whole damn story—beginning, middle and end.

A few months ago, I’d had this idea I would take you through one day in the life of an MS patient visiting the NIH for a clinical trial. I created a new category on my blog: “TRAP trial.” I wrote a few posts.  This series got as far as about 9:45 am, EST, in my day of the life in the TRAP trial. And then a cataclysmic event occurred in my actual life with MS—maybe my drug was dropped?—and I posted about how everything was upended. And didn’t look back. I never wrote the post I’d planned about meeting up with the nurses who have literally held my hand through my MS trials. Or the post about meeting the brilliant woman, young enough to be my daughter, who has developed an app that allows me to perform clinical MS tests myself from the comfort of my own home. I never wrote the post that explains how Dr. Bielekova persuaded me to join the TRAP trial in the first place. And I never introduced you to the indomitable Dr. W. This is some shabby storytelling, indeed.

Let me begin to make amends by introducing you to Dr. W. She has quite the reputation. This is a woman who worked her way to the top on the not terribly level playing field of NIH, where, to this day, only 22 percent of tenured research scientists are women.

When my NIH nurse discovered Dr. W would assume my clinical care, the nurse told me I’d been assigned a neurologist who works only when she wants, and only on projects that interest her. That’s pretty badass.

Meeting Dr. W was like witnessing a 60’s era Katharine Hepburn stride into clinic. There was a hint of horse stable residue clinging to her expensive yet practical shoes. Dr. W springs from a Kentucky pedigree, and bonded with me over her knowledge of Cincinnati. Every subsequent time I’ve seen her, she refers effortlessly to minute details of conversations we’d had months before. Either she is a prodigious note taker, or she doesn’t forget a thing. I suspect the latter.

When I called Dr. W to announce I’d quit Tecfidera, the script didn’t run as it had when I’d rehearsed it on all the other players in my various MS spheres.

Once she got over her surprise that I was on Tecfidera in the first place—she’d been favor of Ocrevus—she insisted I get on “some MS drug” and stay on it.  Even Tecfidera would do. It was the only way I could rejoin the TRAP trial.

We weren’t on a FaceTime call, so she couldn’t see my facial expression drop like a hangdog Spenser Tracy after receiving a tongue-lashing from his whip-smart leading lady. While I have already demonstrated I can persuade just about anyone else of the diminishing returns of taking MS drugs after the age of fifty, I didn’t even try to argue with her.

I told Dr. W I would go back on Tecfidera.

I would rather quit quitting Tecfidera than quit the TRAP trial. Barring a new cataclysmic event interrupting my life’s narrative, I promise I will devote the next post to explaining why this Lab Rat thinks it’s worth it to resume Tecfidera and scurry back into the TRAP.

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Flummoxed (Part 3 of ?)

I get a phone call from my youngest sister, PYT, a.k.a. Pretty Young Thing, just as I am flopping down in the driver’s seat after a lightweight workout with my toys at the gym.

PYT has three Young kids, four and under, who are competing with me for her attention. I win. Intermittently.

I tell her I’ve capitulated. I’m taking my new MS drug just as the doctor ordered, thirty minutes after an aspirin. “I splurged and got myself the kiddie kind.”

“The orange ones? The chewables? The ones that taste like mom loves you and everything is going to be OK?”

“Exactly.” Oh, it is great to talk to someone who knows precisely what the aspirin summons—not only the specific taste, but the specific aura our mother would convey while doling it out.

Now that I take Tecfidera after an aspirin, and a meal with a bit of fatty food—I love my avocado, I love my coconut milk—I don’t get a rash. Or an allergic reaction. Whichever. Dr. Z. had warned me it might take weeks for the rash to stop flaring up. The rash had stopped immediately.

And yet. I don’t trust the lack of rash. You know those times when your room is a mess and your mom has threatened to inspect and you shove all your miscellaneous underwear and books and socks and chewed pencils under your bed, and it’s still a mess but it’s a hidden mess? Well, PYT and I never did that. The hidden mess was our middle sister’s speciality.  (She’s the pragmatist of us three.)  Our  messes were always flagrant—out in the open. And no, we never got points for honesty. But we’d always thought we ought to. Go ahead, roll your eyes. This is not a sentiment I’m proud of.

Am I the same person now? Hell, no. I suspect I’m not the only person with MS passing (less and less often) in public as able-bodied while actively concealing I’m a total hidden mess.

PYT knows me, the past me, the one who’d railed against the hidden mess. She gets my reservation that maybe taking the aspirin is just the same as shoving a mess under the bed. Does the aspirin genuinely alleviate my body’s resistance to the drug, or does it just push the resistance under the surface, where it can’t be seen?

We ponder this distinction as my four year old nephew explores the new paint he’s created by reconstituting dried out markers and as his twin sister mixes that paint with an entirely unacceptable color and as their younger brother decides it’s time to pee.

We wonder if the new drug is even worth it, given the conclusion of the meta-analysis of over 28,000 MS patients from 38 clinical trials that most current DMTs (Disease Modifying Treatments) are fairly useless for the average patient by the time they reach my age. We ponder Dr. Z’s point that I might be an “outlier” — which sounds kind of cool — unless “outlier” means that without drugs I might be the one to get hit with an exacerbation that could permanently disable me further. His distress over this possibility is nothing to dismiss. I’ve looked around his waiting room. Not everyone with MS has the luxury of describing themselves as a hidden mess.

I share the latest conclusion about the three types of MS—which is that relapsing/remitting, secondary progressive, and primary progressive MS are not three different diseases, but rather, three phases of the same disease. The FDA approved DMTs may prevent relapses, but do nothing for other processes known as “compartmentalized inflammation,” which do not show up on MRI’s.  These are the messes under the bed, so to speak. Or more specifically, the messes inside the cells.

We speculate that maybe all those years I had credited Zinbryta for stopping my MS attacks, the change could have really been more of function of my slipping insidiously from relapsing remitting MS into a more progressive phase of a disease, where the breakdown can’t be detected by the MRI, but rather, by the lumbar puncture.

“It’s like a vicious dog that hasn’t bit anyone in twelve years on a muzzle, and I’ve credited the muzzle. But maybe the dog has just mellowed out with age.”

PYT chimes in, “And maybe the muzzle has been annoying for the poor dog.”

PYT and I are both dog lovers. We aren’t fond of muzzles.

I say, “Maybe we just have to be realistic about my MS. It’s a progressive disease. Slowly but steadily, I’ve been progressing. The drugs that work to stop relapsing remitting MS can’t do a thing about the kind of progression I’m experiencing inside my cells. Maybe it’s time to stop fooling ourselves by my taking a drug that only helps for an early stage of MS. I might be way past that phase.”

PYT says, “It sounds to me like you have taken your last Tecfidera.”

My flummoxed feeling is lifting. I starting to feel like myself again. (Talking with a sister will do that.) I share the last thing Dr. Z. said to me, “I will support you even if you don’t want to take any medication.”

His unconditional support means so much. PYT warns me that our mother and my husband will resist my urge to give up the medication. “As they should. They love you. They want to protect you.”

Protect…me? When we were growing up, I never cast myself as the damsel in distress. But that’s the role MS has forced me to play my entire adult life.

 

 

 

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.

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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.