Note from the Rat: Reading over this 2012 blog post from my vantage point in 2016, I am so grateful to the NIH (National Institutes of Health), which has continued to supply me with the MS medication I have depended on to keep my Multiple Sclerosis in remission. This medication, which I refer to as DAC HYP, will (hopefully) go to market with the name Zinbryta. In these intervening years since I wrote this post, all that was asked of me was that I have my liver functions checked locally every six months, and that I fly down to the NIH every six months to have more extensive testing; more bloodwork, a lumbar puncture, eye exams, typical neurologic exams, MRI’s. The length of time it is taking to get the drug approved has been very frustrating to me, as I know more and more people who have been diagnosed with MS who have no access to the medication that has worked so well for me (one brain lesion in ten years, vs many tens of lesions in the ten years previous.) My very dearest friend with MS, Debra C., died while waiting for access to this drug. The only comfort I can take from this long wait is that I, and the privileged few on the safety arm of this study, have accumulated more living proof that one can take this drug for years and years and years with no major side effects. So here it is, my blog post from 2012:
I’ve got 6 months left on the NIH (National Institutes of Health) trial of DAC HYP. After that, I might not get further access to the drug that has kept the progress of my multiple sclerosis (MS) in check for the past 6 years.
I didn’t panic when I was told the money just wasn’t there to keep the trial participants on the drug. I probably should have. As my sister reminded me, “You think you’re doing OK, but that’s not you doing OK, that’s you on the drug.”
She’s right.
I know, because I get monthly reminders of me-off-the-drug. I can only inject DAC HYP once a month, but the effect usually seems to last only three weeks: the week preceding a fresh injection is a drag. Literally. I pretty much just drag my body around, propping it up until my next dose of DAC HYP, when the “real me” can take over again.
What will I do when there is no next injection?
I may be left dragging around a husk of myself until such time as the FDA approves the commercial release of DAC HYP. That process may take as long as two years.
How much damage can multiple sclerosis do in two years?
I can’t afford to find out. My central nervous system has undergone punishing damage already, from the many years I was on no drugs, followed by the many years I was on bad drugs.
Everyone I tell about the upcoming DAC HYP discontinuation has urged me to take another drug in its place. If I had thought there was a more effective drug out there, I wouldn’t be taking a trial drug, would I?
I’ve had plenty of disappointments with other MS drugs.
Some new ones have come out since I started my trial, and maybe those drugs will prove effective. Or maybe they’ll prove lethal. People have died on MS drugs. At times, my MS symptoms have been bad enough to make me indifferent to such a risk. The “real me”, the one on DAC HYP, doesn’t feel that desperate. We’ll see what happens when access to the “real me” runs out.
Somehow I’ve never envisioned a life after DAC HYP that would include sampling yet another MS medication. I’ve been hoping, I still hope, that I would live to switch out DAC HYP for the actual cure.
You see, I don’t want to medicate my MS. I want to vanquish it.
I’m not the only one. There is talk of an MS “cure.” It’s somewhat hyperbolic, but it’s also compelling. Dr. Wahls, a neurologist in Iowa City, used to suffer from a particularly aggressive form of MS that was rapidly debilitating and drove her into a reclining wheelchair. She fought back by eating every “brain food” she could think of, and by exercising as much as was physically possible. I wouldn’t say she is “cured” now, because I bet her lesions didn’t disappear, but she is certainly doing very well. She can stand for the duration of a TED talk. She is also biking to work, she is practicing medicine full-time, and she is starting a clinical trial to examine the effect of diet on MS. It could be, as she claims, that she has reversed a case of progressive multiple sclerosis. I hope so. Or it could be that she’s on the remitting cycle in a mislabeled case of relapsing remitting MS. I’ve ridden on the high of those cycles, myself, exercising like a fiend on my borrowed time. I’m sorry to say those times don’t last. I wish her the best. Especially since, in six months, the Wahls diet may turn out to be the best option I’ll have left.
But why wait six months?
I’ve been eating aggressively healthy brain food ever since I first heard of the Wahls diet, but now I will start eating healthier still. (This prospect terrifies my husband, who claims I already eat healthier than anyone he knows)
I am perfectly willing to trade DAC HYP for eight daily platefuls of kale, if that would help me. I am perfectly willing to lift weights, swim laps, and practice yoga with twice the intensity of my normal schedule. Indeed, how could it hurt? I can foresee only one downside to this course of action. I know I am perfectly capable of blaming myself for not trying hard enough if—or let’s face it, when—the disease strikes again.
Would blaming myself be so healthy? I don’t think so.
A number of good people have approached me to ask what I “do” to remain so healthy with MS. I say I exercise, I say I eat well, I say I do yoga. They tell me I have a “good attitude.” They tell me others, those sicker with MS, do not. That may just be oversimplifying things.
Here’s the deal: I’ve had access to a good drug. Others with MS have not. In six months, I will join their ranks. We’ll see if a mix of a “good attitude”, a good workout routine and good diet will be enough to see me through until DAC HYP goes on the market. I’m sure it’s all very necessary. I can only hope it will be sufficient.
Ms Lab Rat 
Gentle readers:
Thanks for your support.
I’ve been told the drug company is more than willing to supply the drug. The impediment lies elsewhere. I’ve been told I’ll have a verdict in a matter of weeks. In the meantime, my latest MRI demonstrates, once again, that the MS remains stable. That’s the important part.
To be continued…
Who’s the drug company? Maybe we could ask for help from some of the executives?
Lisa, is there any sort of action that can be taken to support you and others who are having success with DAC HYP? Elaine is right, a grandfather clause would be amazing. Is there anyone we can write to? Strength in numbers, and Im betting that a lot of support can be rallied.
We live in a democracy. There is a lot we can do. We can start by preserving funding for medical research at the National Institutes of Health, a national treasure with a global impact.
I’m with Karen: going to keep sending you positive vibes. I hope that writing this story will bring attention to this issue and that you’ll be able to stay on the drug while its trial continues!
So sorry to hear about the discontinuation of your drug. Kevin & I will say some prayers that they find a way to continue the study. Please keep us posted on your progress.
I’ve been through the Avonex and the Rebif, then I was started on Tysabri 7/2011 when I started having seizures from the MS. It was doing OK — I would have been happy to just not have any more seizures! But they started again last month — none for three weeks, Whoo Hoo! I’m going to give the info about this study to my new Neurologist (I couldn’t get through to my old one when I was having the seizures, and neither could the ER docs!). Maybe she knows of one I might be eligible for, although I live in Alaska, and can’t travel. I’ll try, anyway. I won’t give up if you don’t, OK?!?
I could not imagine being told that a medicine that was working for my condition would be taken away, I wish there was more that I could do to help you to keep receiving this medication that is helping you and many others.
I could not imagine being told that a medicine that was working for my condition would be taken away, I wish there was more that I could do to help you to keep receiving this medication.
Every time we get to see you it seems you’re doing so well, so well in fact that the average onlooker would never suspect that you’re struggling with MS. We know how hard you work at doing your part to keep your body and your mind strong. And it’s encouraging to hear that this drug has been doing for you the parts you cannot do on your own but it’s awful to think that soon you might have to do without the help of that drug.
C’mon, Sean. My last-place performance in the annual horse shoe toss wasn’t a tip off that something was horribly, horribly wrong? Seriously, though, thanks for the support you and your family have shown me since way back when you boys were kids and you folded all those cranes for me and Elaine.
Lisa – this is terrible. I hope we can get money freed up so that the trials can continue and your MS can continue to NOT worsen. I don’t know how many people are involved in the study or how much money they need to keep going, but will make sure that any org. I can think might help will hear about this. Great website, and great courage on your part!!
Lisa,
This horrible & I hope a concerted effort can change this drift before it’s too late for you. I know very little about drug and health care legislation but it seems an ethical no-brainer that when an experimental drug is having a good effect on some of its lab-subjects (can’t us the r word) a way ought ot be found to continue to supply that drug to those subjects until the cumbersome approval process is completed.
Elaine; That is a good idea, perhaps you could contact your Senator and/or Congressman and get a bill going.
Recently I met a man named Mark while standing lin line at Philadelphia’s Broad St. Run. He was loaded down with a knapsack containing 30 ponds of bricks and a half case of beer. While I understood the beer, I wondered about the bricks. When he stepped into the portajohn, I asked his friend what the deal was. I probably said something classic like “what’s his problem?” Turned out, he had MS and was doing all kinds of extreme sports as a therapy in his desire to beat his MS. I ran into him at the next event I ran in. Anyway, I don’t know if I would have the strength of character or body to fight the fight both Lisa and Mark are engaged in. I hope, with the seemingly boundless resources of this country, that we find a way to solve this problem of drug access that is so important to Lisa and her family, and may one day be what Mark needs – though I hope he can continue to rely on bricks and beer.
I would be heartbroken if, for a moment, I allowed myself to believe the drug will be taken away. But I’m refusing to go there. Stay strong, stay focused, hold on to your hope, and we will hold on to you, dear friend.
I agree with MaryJo! Here is to the continued availability of the drug…
Lisa, I’m very upset to hear this news. I don’t understand how it can be ethical for the drug company to take away the one drug that is working for you. There should be some kind of ‘grandfather’ clause where those benefiting from the drug during a trial are permitted to continue using it while the FDA goes through approval process.
What can be worse than hope that is taken away? Here’s to the continued availability of the drug.
My neurologist told me she was negotiating with the drug company. Negotiations will continue.
Horrible news on the MS drug. You say that you *might not* get further access. I hope that means that there’s a decent chance you’ll somehow still be able to take it. How does that look?