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.