Tag Archives: Zinbryta

The Ordinary Woman in the Airport

 

My husband and I were hanging around the welcoming area of CVG, watching for our son amid the parade of newly arrived travelers, when I recognized someone I had never seen before. I recognized her deeply, with every thwarted nerve in my MS racked body.

The woman was ordinary enough; middle age, medium build, medium brown hair cut to a medium length. But her gait…wasn’t quite ordinary.

Don’t get me wrong, the woman was moving about as fast as any of the other newly arrived travelers. But it was clear to me that she was expending about ten times as much effort to do so. Her legs clearly had their own agenda; they wanted to dangle. She was forcing every step; her legs dragged and flopped but ultimately kept flopping in the right direction. And because of that, because she could see she was closing in on the greeting place, she had a big smile on her face—not a forced one—a smile of absolute triumph, like a marathoner approaching a spangled banner.

I recognized myself in her smile; I knew the depth of her achievement. I used to walk that walk, or a version of it, every month on my way home from another clinical trial visit to the NIH (National Institutes of Health) where I would receive another dose of the MS medication now marketed as Zinbryta. This drug has kept me walking, albeit with great effort.

Consider this post my small effort to remind you, gentle reader, that NIH is there for you, finding cures to diseases you may be unaware exist…until one day that disease strikes you, or a family member. Funding for the NIH is in danger right now. And if that doesn’t seem a relevant topic to you right now, congratulations. But good health is transient. You have to work to keep it. And sometimes, despite your best efforts, it slips away.

Please do what you can to maintain your health. Do what you can to maintain the NIH.

Keep smiling; ordinary people can achieve extraordinary things. Just think of that woman in the airport. Here’s the secret behind her smile: sometimes it takes ten times the effort to keep moving forward, but when the goal is in reach, there is ten times the satisfaction.

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?

 

 

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.

And now, another plot twist

Humana just wrote to deny me benefits for Zinbryta, the medication that has kept my MS at bay for ten years. Am I going to fight this? You bet.

They claim they are denying the drug because I don’t have “pre-existing hepatic disease.”

That’s interesting, since a person is not advised to treat MS with Zinbryta if they do have hepatic disease.

Poor Humana. I will have fun. I will win.

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Once A Lab Rat, Always a Lab Rat

The NIH study that has nurtured me since 2010 is over. The day I’ve been anticipating with measured trepidation has finally arrived. A few hours ago, I took the last of the vials of free medication from the NIH out of my refrigerator, and injected.

If the drug had not passed the FDA approval process, this would have been a very sad day. But it did pass. The fruition of the study is available commercially as Zinbryta. Dr. Z., my neurologist, has already set in motion a smooth transition for me; I’ll be the first of his MS patients to purchase Zinbryta. I won’t have to miss a dose of the drug that has given me my life back.

So today, then, marks the happy ending to my life as a Lab Rat?

Not so fast.

Today marks the closing of one chapter. And the opening of another.

This morning I received a phone call from a research assistant named Brianna. She asked me ten easy questions designed to provoke pleasant answers, such as, “Today is Tuesday, September 15, 2016” and, “Barack Obama is the President of the United States.” At the end of this quiz, I found myself qualified to be a Lab Rat in the MS Diet Study.

As any faithful reader of this blog knows, I am very interested in the role of diet in the management of MS. I’ve been intrigued by the Wahls Diet since seeing Dr. Wahl’s TED talk; I couldn’t help but be impressed that she has managed to eat her way out of a reclining wheelchair and back to full time medical practice.

This study will randomly assign me to either the Wahls Diet or the Swank Diet. As it happens, I am comfortable with both. Dr. Z. has met many people with MS leading active, healthy lives on the Swank diet. It will be a win for me either way.

I don’t have to ditch Zinbryta to participate.

Could a lab rat be any luckier?

Another fun perk of this study: I will be traveling to Iowa City, home of the Iowa Writer’s Workshop, where I got my MFA in fiction, and, come to think of it, my MS diagnosis. This Lab Rat will be traveling full circle.

I do hope you will follow Ms. Lab Rat to my next maze in Iowa City. I won’t be able to blog about which MS Diet I am assigned to, because the researchers must be blind.

I am so very grateful, above all, to my husband, who likes our current diet very much, but is willing to give an MS diet a try.

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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.

Finally…FDA Approves Zinbryta

IMG_4206I just read that the experimental drug I’ve been taking for ten years has finally been approved by the FDA and will be available as Zinbryta. This must mean Ms. Lab Rat is officially retired. After many years of commuting to the National Institutes of Health (NIH) to take the only drug that’s stopped the progress of my multiple sclerosis (MS), I am now going to have to buy the drug like everybody else.

You know what? I’m thrilled. I’ve hated having to hear heartbreaking story after heartbreaking story of yet another person getting an MS diagnosis, getting an ineffectual, often expensive treatment, getting worse. They look at me, and I appear fine. I’m not, but I’m also not getting worse. My medication has worked. But for these past ten years, so many others with this disease have had no chance of seeing if this medication would work for them. My dear friend Debra died way too young still waiting for this day. As you can imagine, I’ve been on the phone a lot this afternoon, updating every person who has asked me about Zinbryta. This blog post is for those of you whose numbers aren’t in my contact list.

Until I let the world know the risk I took with this drug was worth it, I won’t feel that my tenure as a Lab Rat is well and truly over. But I guess an era has come to an end.

No more free flights to Washington DC for free MRI’s. No more free top level medical care. No more cognitive tests. (Hooray!) No more free monthly blood tests to check my liver function. (My liver is just fine, thank you.) No more nights on-site at the swank Safra Lodge. No more free stays at Bethesda Court Hotel. No more side trips to the awesome DC museums and zoo. No more viewings of indie films at Bethesda Row Cinema. No more delicious dinners at Bethesda’s many fine restaurants.

Do you get the idea that being in a clinical trial at the NIH has been a pretty sweet deal? It has been for me. But what I’ll miss the most will be the people: the brilliant doctors, nurses, and interns of the NIH. Why, even the taxi drivers usually had pretty fascinating back-stories to share, if given half a chance.

The one thing I regret about my participation in the trial is that I waited until the end to reach out to other guests at the NIH; like the older lady I met in the shuttle van who’d lost both breasts and lymph nodes to ineffectual and painful cancer treatments. The cancer had spread and spread for years until she was accepted for an NIH trial (“I couldn’t believe it, at my age.”) Now her NIH doctor extracts some of her immune cells, expands the cell population in the lab, and treats the cancer with it. Her cancer? Gone. The side effects? None. She’s one happy lady. The NIH complex is full of motivated people pursuing second chances, and I wish I hadn’t been too timid and/or respectful of their privacy to chat with them. (If anyone reading this is an NIH lab rat, consider this your invitation to introduce yourself.)

I’d meant for this blog post to be about Zinbryta, but I guess it’s just a big thank you note to the NIH.

Zinbryta has been safe and effective for me for years now, and I’m terribly eager to let people know that there is one more—I think far better—alternative out there to try. But if Zinbryta doesn’t work for you, do not despair. There are plenty of other MS drugs in the research pipeline. Maybe one day you’ll wind up as a Lab Rat, too. Clinical trials are not all MRI’s and blood work. They are also an investment for the future of others coping with disease. Who knows…maybe one of us will one day be a Lab Rat for the drug that winds up becoming the cure. I won’t stop hoping.