Going MS drug free: the flawed arguments

There are a number of reasons not to take disease modifying therapies for your multiple sclerosis. And by many, I mean three. And one relates to a kitchen sink (with garbage disposal, not shown). Before you make the decision to go drug free, please read this. Please. 

[9 min read]

If you have relapsing multiple sclerosis and are under the age of 50, there are many legitimate reasons not to take disease modifying therapies (DMTs) for your MS. 1) You are allergic and/or your body cannot physically tolerate any of the available medications. 2) You cannot afford DMTs because you have no health insurance—or your insurer denied access to MS medication and the appeals failed—and you are ineligible for any of the multitude of patient assistance programs. 3) You’ve tried virtually every drug available to you and participated in clinical trials and still, despite throwing even the kitchen sink complete with garbage disposal at this disease, 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 a sizeable percentage of MSers are not on any form of DMT. Even those with progressive forms of the disease are being helped with the newest therapies, a long-overdue and desperately needed advance. While these drugs aren't as effective as we'd like them to be for people with more advanced MS, slowing disability by any degree is still a big, big deal.

For decades, neurologists and those afflicted with MS had been pleading, begging, for any sort of treatment. Anything. Finally, in 1993, DMTs arrived and have effectively changed the direness of a diagnosis of multiple sclerosis. By how much, you ask?

Ask your neurologist if he or she has seen a difference in the level of disability of their patients before and after DMTs became available, and the answer universally will be without question. And they’ll say that that difference has been dramatic. Which is why neurologists—each of whom has dedicated themselves to a professional career to become a specialist to help you—understandably are frustrated when their patients say no thanks to treatments. At least a decade of schooling, internships and residencies, often combined with years and years of hands-on experience, all summarily dismissed because of "I saw this alternative MS treatment on the internet."  

Can you blame neurologists for turning Smurf blue in the face trying to talk sense into their patients? (One even wrote a whole blog post bemoaning that.) They are human. They lose sleep worrying about their patients. They cry when the people they care for suffer devastating setbacks. Some have even gone so far as to fire patients for eschewing helpful medication. Craziness, right?? But put yourself in their shoes. If you are not going to help yourself and use their expertise, you are taking away a valuable slot from another patient who will.

After reading this post, maybe you'll better understand why they have so much urgency.

If neuros 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 this insidious burn is happening at the very earliest stages of the disease, even while your symptoms are nonexistent. But I won’t.

I could inform you that delaying treatment, even by just a couple years (to see what happens?), has lifelong consequences. That the treatment-free you, studies have found, will never, ever be able to catch up to the less-disabled you had you started treatment earlier. 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 invite you to tell the individuals and families devastated by diseases with zero effective treatments—like Alzheimer's or ALS or Huntington's or countless others—that while you have a cornucopia of new and effective treatment options to treat your MS, you're gonna take a pass. 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 DMTs to have a positive influence on this disease—preventing relapses, slowing the accumulation of brain lesions, delaying the start of secondary progression, and postponing disability. But I won’t.

I could point out that your same convincing arguments about the devastating effects of climate change—supported by 99% of climate scientists and mammoth amounts of research!—uniquely parallel the same arguments for using DMTs in MS. 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 that 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 vocal drug-free cheerleaders on the internet (who all are doing great on this diet or that supplement!). Who cite questionable studies... done by the same people who peddle those very diets or supplements. 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 years. Over 20 pages and 10,000 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.

Arguments Against Taking DMTs for Your MS

“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 and who may be your future caregivers—your spouse, children, parents, brothers, sisters—still happy with your decision? 

“I’m waiting for better treatments like stem cells. Or maybe something with the gut microbiome.” Interesting research for sure. 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, most 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 DMTs? (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 to 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 DMTs 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 can rain down if left untreated. 

“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?

Then there is the Steve Jobs defense. "I'll treat my condition naturally and allow my body to repair itself. I'll try traditional treatments later if that doesn't work." Just a wee problem. Like cancer, MS progresses unrelentingly because that's exactly what progressive diseases do. And that delay likely will have a lifetime of consequences. Tragically, as Mr. Jobs discovered, there are no backsies. Time is of the essence.

The Bottom Line on Taking MS Drugs

All right, 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 DMTs 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 have the potential to delay disease progression, reduce relapses and postpone secondary progression. 

I know what you are probably thinking.... Whoa, Dave, wasn't there that one study published years ago that found that shots DIDN'T slow down the disease much?!? And I know a person who experienced complications from a drug and she got WORSE. Plus, I've read a LOT of scary stuff on Facebook....

Instead of putting all of your disbelieving eggs into a few studies, cherry-picked examples, and social media "research," perhaps look at the bigger picture. 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 evolving into conditions 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 largely be managed and most people can live with those disorders if treated.

Here’s the bottom line. With treatment, many people can enjoy pretty normal lives with MS short of a cure. 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 and today it's one of the largest and longest-running personal MS website on the internet—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. Those miracle MS diets that are all the rage on the interwebs? Not one dieter has ever told me their food choices have reversed their MS. Not one. Worse, I have been asked through tears what they had done wrong because they followed Diet X to a T and were still progressing. It's heartbreaking.

And then sadly 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 DMTs to begin with. 

Now I can’t promise that disease modifying therapies for your multiple sclerosis will work for you. Even a full-on stem cell transplant wasn't able to contain my aggressive MS. But I can promise that with this disease, you never want to start a sentence with “if only…” 

We are in a golden age of multiple sclerosis treatments. Please take advantage of them while you can. The therapy window for MS is open widest in the beginning stages of the disease. The decisions you make right now will reverberate for a lifetime. The longer you can keep your disease at bay 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.