Monday, August 22, 2011

Going MS drug free: the flawed arguments

If you have relapse remitting multiple sclerosis, there are many legitimate reasons not to take disease modifying drugs (DMDs) for your MS. You are allergic and/or your body cannot physically tolerate any of the available medications. You cannot afford DMDs because you have no insurance and are ineligible for any of the multitude of patient assistance programs. You’ve tried every drug available to you and participated in clinical trials and still, despite throwing even the kitchen sink complete with garbage disposal, your neurologist feels that the drugs are having no effect … and a second opinion supports your neuro. And, hmm. Oh, by many reasons, I meant only three. And they aren’t terribly common.

Which makes me scratch my head as to why an estimated 43% of people with RRMS are not on any form of DMD therapy. For decades, neurologists and those afflicted with MS had been pleading, begging, for any sort of treatment. Anything. Finally, two decades ago, DMDs arrived and have effectively changed the direness of a diagnosis of multiple sclerosis. Ask your neurologist if he or she has seen a difference in the level of disability of their patients before and after DMDs became available, and the answer universally will be yes. And they’ll say that that difference has been dramatic. Which is why neurologists—each of whom have dedicated themselves to a professional career to become a specialist to help you—understandably are frustrated when their patients say no thanks to treatments.

If they can’t convince you, how can I convince you?

I could tell you that damage is being done while you are reading this sentence. That your brain is shrinking. That axonal loss is happening. And that these problems are irreversible and research has shown that it starts happening at the earliest stages of the disease, even while your symptoms are mild or nonexistent. But I won’t.

I could remind you that while MS treatments have side effects, most are easily manageable. That the devastating side effects this disease effortlessly can deliver are infinitely worse. But I won’t.

I could urge you to spend an afternoon volunteering at your local nursing home to help care for someone with MS. To bathe them, dress them, feed them, change their catheter, wipe their bottom, and then start all over again. But I won’t.

I could educate you about the countless studies, endless research, and copious analysis that have shown DMDs to generally have a positive influence on this disease, preventing relapses, slowing the accumulation of brain lesions, delaying the start of secondary progression, and perhaps postponing disability. But I won’t.

I could tell you that taking injections isn’t that hard after the first few, even for someone who is so afraid of needles that he has to leave the room when any medical TV show come on. But I won’t.

I could remind you that for hundreds of years, the only thing people could do for their multiple sclerosis was to change their diet, take herbal remedies, and swallow vitamins. That those treatments didn’t slow the disease then and that there is no solid evidence they slow it now. But I won’t.

I could warn you not to base your entire decision on how to treat your MS on a handful of vocal drug-free cheerleaders on the internet (who all are doing great!). But I won’t.

I could say all these things. Heck, I’ve tried. This has been written and rewritten (and edited and then edited again) for the past five years. Over 20 pages and 8,000 words. But each time I would have to stop and start over. Too preachy. Too snarky. Too criticizing. Too scary. Meh, whatever. I’ve finally come to the realization that in all likelihood nothing I say will change your mind. That my droning on only will make you resent reading this more and inspire a personal Voodoo doll menagerie of mini Daves (locks of hair provided upon request). After all, you have your arguments.

“It’s my life—it’s my call. I’m comfortable with my decision not to take drugs.” Fair enough. I want you print this out, put it in a safe location, and in 10 years dig it out. Are you still happy with your decision? Are the people you are closest to who are likely your caregivers—your spouse, children, parents, brothers, sisters—still happy with your decision? “I’m waiting for better treatments like chronic cerebro-spinal venous insufficiency (CCSVI) and stem cells.” But while you wait for treatments that may or may not work, MS is doing its malicious work oh-so silently, increasing your level of disability, and, ironically, making it less likely the promising treatments of the future will be able to help you.

I also hear arguments that are curious. “I’ve taken Drug X for so many years and I’ve decided it doesn’t work because I don’t feel better.” Does your neuro agree? Remember, the current available drugs don’t reverse disability; they just slow down this progressive disease. Who’s to say it wouldn’t have progressed far faster without your DMDs. (It also should be noted that if you feel your drug isn’t working, that means by association that the combination of your special diet, expensive supplements and unique exercise routine isn’t working either—there’s no way separate the successes or failures of the two. So are you going to quit all of those too?) “I’ve taken Drug Y for years and I’m going off all DMDs because of the miserable side effects.” Why would someone stick with one drug for years feeling crummy? And then just stop altogether without trying any others? Oh right, because of the not-so-popular mantra “If at first you don’t succeed, uh, quit.”

And I hear arguments that push the boundaries of common sense. “I’m fine if I’m in a wheelchair later as long as I can have a medication-free life now.” This is a person who really doesn’t grasp the power of this disease, which can rain down far crueler punishments than a chair with wheels. Blindness, deafness, inability to swallow, inability to feel, inability to comprehend even a sentence. “I don’t want to be tied to medications for the rest of my life.” Huh? The whole point of these medications is to delay progression so you won’t need as many meds to treat all of the complications this disease eventually brings to most of us. “I don’t want my kids to see me suffer from the medication side effects.” What? So you would prefer your kids to see you suffer from the disease itself?

All right, some of my comments might seem over the top and I apologize. It’s just maddening the lengths people will go to try to justify not treating a treatable disease. Contrary to all the well-meaning folks on the internet who wax that the decision of whether or not to take DMDs is so hard (and always so personal), all the evidence points to a rather easy answer. This isn’t deciding on that grueling third round of chemotherapy to extend your life maybe an extra few months so you can see the birth of your grandchild. This is about taking drugs—even though they are expensive and don’t work perfectly—that may delay disease progression, reduce relapses and postpone secondary progression. 


Whoa, Dave, didn't a 5-year Canadian study released in 2012 find that the "administration of interferon beta was not associated with a reduction in the progression of disability"? Yup. But that looked at just one class of drug. And a similarly large 10-year Italian study, released weeks earlier, found that "the risk of secondary progression was significantly lower in patients treated with DMDs" and that "DMDs significantly reduce the risk of multiple sclerosis progression." Then a 12-year Swedish study, released after these two, concluded that "there was a longer time to SP in the contemporary subjects given DMD." Who to trust? Instead of putting all of your disbelieving eggs into one study's basket, perhaps look at the bigger picture (and beyond the now questionable interferons if you prefer). There are today many drugs—and more in the pipeline—that may help you keep living the life you want to live with typically only modest side effects. One of my neurologists makes a key point: MS is now a lot like hypertension and diabetes.  Neither of those disorders can be cured and both cause lots of complications and disabilities (stroke, heart disease, neuropathy, vision loss, etc). But they can be managed and most people can live with those disorders if treated.

Here’s the bottom line. Many people can enjoy pretty normal lives with MS, short of a cure, with treatment. I look at taking MS medication a bit like wearing your seatbelt. Yes, there are cases where the seatbelt will never be needed over the course of your lifetime—where the MS remains at bay even without therapy—but those tend to be the exception. And true, in the rarest of cases, wearing a seatbelt could do more harm than good. But that’s like saying broccoli could kill you… if you asphyxiate on it and no one is around to do the Heimlich and you just sold all your dining room chairs on Craigslist and you have no furniture left to flop on in order to do a self de-choking maneuver. What I’m saying is that statistically wearing your seatbelt and taking your MS meds (heck even eating your broccoli) will help you. And it could absolutely save your life—or at least your quality of life.

In the years that I’ve been running ActiveMSers—I started the website when I was diagnosed in 2006—I’ve met in person and online thousands of people with multiple sclerosis. And not one has ever told me that they regretted taking a disease modifying drug. Not one. But I’ve met lots who wonder what life would have been like if only they had just not given up so quickly. If only they had just started taking those medications earlier. If only they had just tried, tried, taking DMDs to begin with. The saddest part for me is hearing from those desperate to get onto an exciting clinical trial (like the one I am on, which has saved my life) only to discover that they don't qualify. And why not? Often the most aggressive, cutting-edge trials require that the patient must have failed at least one or two FDA-approved therapies first.

Now I can’t promise that DMDs will work for you. But I can promise that with this disease, you never want to start a sentence with “if only…” As someone with relapse remitting MS, you have a rare wealth of treatment options, while those with secondary and primary progressive MS tragically have virtually none. Please take advantage of them while you can. The longer you can keep your disease in the relapse-remitting phase the better—indeed it could change your entire future. You alone have the power to take charge of your multiple sclerosis. So (wo)man up and do it.

Updated March 15, 2013

Tuesday, August 16, 2011

The inevitable case … of the multiple sclerosis worst case scenario


I got a call the other day from a woman who appeared to headed to a diagnosis of multiple sclerosis. Her doctor had said it was a possibility, and just hearing those two words–-multiple sclerosis–-sent her down the path that many of us have trodden: Multiple Sclerosis Worst Case Scenario (MSWCS). 

Yeah, you know what I’m talking about. MSWCS is a common affliction of those newly diagnosed or in limbo. Your brain immediately fires up the WCS lobe and now the worst things that MS can do to you are not only a possibility, but practically a given. In a wheelchair. With no bowel or bladder control. Blind. Deaf. Can’t swallow. Can’t talk. An absent brain. And you are so numb you can only feel your nose, which itches all the time. But you can’t scratch it because you can’t move your arms. Oh yeah, and your health insurance got cancelled, your family put you in a budget nursing home, and your dog was adopted by a Mr. Vick. 

When these thoughts weave their way into your mind, you have to tell your brain to SHUT THE HELL UP. Sure, MS can do all of the above. But why dwell on it? MSWCS is quite unlikely. Stats show that many people with MS can and do live relatively normal lives. Yes, you’ll have to make changes. No, it won’t be easy. Focus on what can you do today and worry about tomorrow, well, tomorrow. And with the advances in MS research, odds are good that there will be some powerful treatments (potentially even fixes) coming in the not-too-distant future. So banish all MSWCS thoughts … use your brain for more important matters, like a good sudoku puzzle.

Originally posted March 24th, 2008