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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just my luck

 

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Wahls Elimination Diet vs Swank Diet: Which Is the More Effective Treatment for MS Related Fatigue? Ms. Lab Rat jumps into the maze.

Some Background (faithful readers can skip to paragraph 5):

As my faithful readers know, I am a machine with faulty wiring. Multiple Sclerosis has somehow managed to convince my T-cells to attack the insulation that surrounds the nerves conducting all the information my body needs to function optimally. This insulation is called myelin, and my myelin is ratty with scars. (Multiple sclerosis=many scars.)

When I got the diagnosis, I refused to accept my fate. I tried the first medication I was offered. And when that didn’t work, I tried a second. And when that didn’t work, I entered a clinical study of a new medication, one, I was told, that really made a difference. But as will happen 50% of the time with clinical studies, it turned out I was assigned to the control group. I didn’t get the new medication. I got a placebo. And I got more scars.

I not only tried new medications, I tried new doctors. (I moved around a lot, at first, so that part could not be helped.) When my fourth neurologist gave me the dour news that I was doing very badly, and could expect to do worse, and then much worse until I died, well, I switched to a cheerier doctor. Who gave me the same dire news, but with a big smile. I dumped her, too. Instead I found a brilliant researcher, Bibiana Bielekova. Researchers are always looking for better ways to do things. So am I.

Long story short, I talked Dr. Bielekova into letting me try an off-label drug that worked with the immune system, rather than fight it. Daclizumab works by boosting the population of Natural Killer Cells, which function like the good cops in the Wild West of my immune system; the Natural Killer Cells keep the rouge T-Cells, or bad cops, at bay. Daclizumab worked. The T-Cells stopped attacking my myelin. Eventually, the National Institutes of Health (NIH) funded a study of Daclizumab. I was lucky enough to join the safety arm of the study, so I was assured a constant supply of Daclizumab. In the last ten years, this medication has been so effective, the T-cells have only once managed to create a new scar. Earlier this year, the FDA apporved Daclizumab under the name Zinbryta. On the day I injected my last dose of free study medication, I was accepted into a new clinical trial.

Faithful readers, jump in here:

Finding a drug that stabilized my MS only solved half of my problem. While my T-cells have stopped chewing on the fatty myelin that insulates my nerves, the many scars created by years of insatiable gobbling still interrupt the signals of my central nervous system. I have to cope with fatigue, pain, lack of coordination and balance, and a digestive system that’s out to lunch. Oh yes, and a brain that continues to shrink. You would think, then, that a person as proactive as I am would have immediately acted when I saw a very convincing TED Talk by a smart researcher who overcame an even worse case of MS than mine. Like me, Dr. Terry Wahls took the latest greatest MS medication. And like me, her MS only got worse. Dr. Wahls soon found herself confined to a tilt-recline wheelchair. Unlike me, Dr. Wahls is a physician. She read the latest medical research about diseases in which brains shrink. She read studies in which animal brains had been protected from shrinkage using fish oil, creatine, and co-enzyme Q-10. She started taking human proportioned dosages of these substances, and started getting better. This was her first round of self-experimentation. Slowly but surely, she tweaked her diet to include and exclude certain nutrients and ultimately found herself out of the wheelchair, biking to a full day of work as a doctor, and, of course, promoting the diet that saved her. She managed to get the Multiple Sclerosis Society to chip in 1 million dollars to fund a scientific study to compare her diet with the Swank Diet, one that has been  found to help people with MS for decades. I, who was somehow too intimidated years ago to follow the Wahls Protocol, have now agreed to be part of this study, which is going to be a much more onerous and complicated option than simply buying her book and following along. How much more onerous and complicated? I’ll share the details in my next post. But strange as it is, a Lab Rat is a Lab Rat. I would rather experiment on my diet in a study as a contribution to the greater public knowledge than to simply tinker with the diet on my own.

How about you? Have you ever participated in a clincial trial? Would you?

 

 

Ask About Your Medication

Note from the Rat: The medication I refer to as “daclizumab” back in 2011 is expected to be marketed to the public as “Zinbryta.”

It is good to ask questions. Even when the answers aren’t always pleasant—especially when the answers aren’t pleasant.
No one likes to ask questions when things are going well. My first months on daclizumab went really well, so I didn’t bother to ask my nurse about the origin of the clear liquid dripping down the IV tube into my veins. Whatever it was, it was working. My multiple sclerosis symptoms were fading into the background. I couldn’t ask for more than that.
So I didn’t.
Month after month, I had the same nurse arrive at my home for infusions. We took to chatting. The heparin scandal came along, taking the lives of 81 Americans who had assumed—as I’d assumed—that nothing fatal could be lurking in a labeled medication. That month, the nurse told me it wasn’t necessary to flush my veins with heparin. I gave her the go-ahead to use it anyway. I didn’t want to mess with success. Eventually, though, I think we may have agreed to skip the heparin flush. Daclizumab kept on working, either way.
The January 2010 home infusion seemed no different than the others. Neither of us knew it would be our last. As usual, my blood pressure was low, as was my temperature—96.8. As usual, I had no troubling new symptoms to report. The drip itself never took all that long—maybe 15 minutes— and as usual, the nurse and I chatted those minutes away. The nurse mentioned she’d seen me lifting weights at the rec center while she’d been walking the track. I told her it would be OK to interrupt me the next time she saw me there. Neither of us could have guessed there wouldn’t be a next time.
I didn’t start to feel funny until the nurse was gathering her bags to leave. Even then, I didn’t feel funny enough to stop her. My temperature shot up during the interval between the thud of the front door and the clap of the screen door —the screen door hinge is on backward, which makes for a thirty second delay.
I headed straight for the couch, and caught a glimpse out the window of the nurse’s car pulling away. I lay down. Something wasn’t right. At that time in my life, it was unusual for me to lie down while the sun was still shining. I dragged myself off the couch and up the stairs to take my temperature. 98.8.
I wasn’t sure if I should call the nurse. Everybody knows 98.8 is not a fever. But 98.8 was two degrees higher than my temperature of just half an hour before. I was comfortable with that nurse. Even so, I didn’t want her to think I was a big baby. Or a hypochondriac. Or a fool. But then I got to wondering about the contents of that IV bag. Who was to say it wasn’t tainted, like the heparin a while back?
I swallowed my pride. I called the nurse and left a message.
It was a good thing I did.
The high temp resolved itself without any apparent consequence. I felt sheepish when the nurse returned my call that afternoon. But then I heard her news. I quit being sheepish, and shifted into high alert.
Apparently, after listening to my message, she’d called the pharmacist to ask about my drug.
“Guess what he told me? He said I just gave you the last of that medication. It’s been taken off the U.S. market.”
I asked if there’d been another safety scandal. She assured me there had not. “Someone’s bought the entire inventory.”
I wondered aloud, “When was anyone going to tell me?”
The nurse didn’t have an answer for that.
If I hadn’t gotten that little spike on my temperature, I could have easily gone another month without knowing I had to line up a new MS medication. I’d already gone through all the standard MS meds, with no positive results, which was why I was taking an off-label drug in the first place. I didn’t know what I would do without daclizumab. There wasn’t another drug out there I knew of.
There’s a happy ending to this little anecdote.
Yes, it’s true I didn’t get the answer I expected when I asked about my medication. But that unexpected answer motivated me to ask more questions. I managed to track down Bibi Bielekova, the neurologist and researcher who had first put me on daclizumab. She had a new gig at the NIH. I sent her an email on a Saturday, asking for her guidance. She replied almost immediately.
Once again, I didn’t get the answer I expected. Her email contained an offer I couldn’t refuse.
As it turned out, Dr. Bielekova was the one who had gathered all the remaining stock of daclizumab. She’d just negotiated a clinical trial for the next generation of daclizumab, called DAC HYP. She would be switching her patients who’d been on daclizumab long term to this new preparation. She wasn’t sure, but she thought she might have an opening to accommodate one more patient in the trial. My flights would be paid for. Then came the clincher, “The care at NIH, including the drug, is free.”
Now you know how I can afford to make all those trips to DC; I happened to ask the right question of the right person at precisely the right time. I’m going to try to make a habit of that.
My next entry will be a review of the formidable book, Dangerous Doses, written by Katherine Eban, another woman who isn’t afraid to ask questions about medications. The answers she’s uncovered may disturb you. Or they may just motivate you. Dangerous Doses has certainly motivated me. Our drugs are too important to remain a mystery.