Flummoxed (Part 4 of 4)

My friend Monica also has MS. She does not medicate. Which is not to say she does not treat her MS. Monica chooses her activities carefully. She exercises every day. She chooses her food carefully, following a Wahls-like diet, or what some of us call an auto-immune protocol. (AIP) Monica is also an exceptionally kind and gentle—non-inflammatory—person. (Am I implying MS is an expression of a personality defect? I hope not. I’m just observing that it’s hard to create a spark without any friction. Every life has friction. Monica seems to have a talent for not creating any friction, herself.) Monica never tries to talk me into living medication-free. I never try to talk her into taking medication. (I might have made a recommendation to take Singular, an allergy drug that has been shown in the lab to transform the brains of old rats into brains that function like young rats. But that’s for another post.)

When Monica texted to ask what our neurologist had to say about my rash, I wrote, “Z says he will support my decision even if I stop taking FDA approved drugs. But it’s such a tough call. If I’m wrong, and I get an exacerbation, I’ll blame myself. If overheating on this drug gives me an exacerbation, I will also blame myself.” I was perhaps exaggerating  (or as we as say in my family of origin, ‘over-exaggerating’) when I texted about the perils of overheating. Overheating merely creates pseudo-exacerbations, or transient worsening that last until the MS host cools off. Pseudo-exacerbations sure feel like the real thing, but they don’t bring on permanent damage (as far as we know.)  You see how Monica and I are opposites? Even after years of daily work to mellow out, I still have a tremendous talent for creating friction out of thin air.

Monica texted, “Yes, it’s a tough decision. Think we should decide not to blame ourselves either way. I will always support you, wwld* :)”

*wwld is of course short-hand for what would Lisa do? Feel free to sprinkle this liberally all over the internet, like lesions on an MS MRI.

Note that when I texted that I’d decided to drop the Tecfidera, Monica didn’t text back, “told ‘ya so,” or “welcome to revolution against rapacious Big Pharma” or anything. The Lisa she knows is a much better person than Ms. Lab Rat.

Her sweet response was not at all surprising. I didn’t expect to get any guff from Monica. The guff, when I got it, came from an entirely unexpected quarter.

 

 

 

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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 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