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.
More than the patients who decide against treatment, I am amazed at the neurologists who still say that they wouldn't necessarily put every RRMSr on a DMD
I know that they are not the ones who have to live with the disease and when I go blind or am in a wheelchair because I haven't taken medication- they are not going to be the ones who will even push my wheelchair.
I'm glad the stem cell treatment worked for you.
I am one of those who has chosen not to take any medication, and 2.5 years since diagnosis and a very serious and lengthy episode, am doing really well and am moving steadily towards having better health than I have ever had. I firmly believe that this is not an act of chance or that I have 'benign MS', as I have worked extremely diligently to take my health in the right direction. I believe that the main reason that I became ill in the first place was due to extreme stress and emotional strain in my life. In the last 2.5 years, my approach to getting well has been manifold and based on extensive research. I have focussed on the following things: dramatic reduction in stress; diet change (low sat. fat, dairy free, largely gluten free); tackling of emotional issues that were causing strain; learning to show proper care for myself; taking exercise when possible; treatment for CCSVI; taking vitamin d3 & other supplements; believing that I could get well; faith in a healing God. I have followed to quite a close degree the recommendations of George Jelinek's book, Overcoming Multiple Sclerosis.
I chose not to take medication, as I believe that to treat something that you are unsure of what is causing it, with large amounts of drugs, is not the best approach. Our bodies are designed to heal themselves, and I think that if we provide the correct environment for them to do that, that they will. Stress is the number one cause of illness and the number one compromiser of our immune systems, and I believe that any approach to treatment that does not take this into consideration is misguided. I must add that I also think it is misguided to decide not take drugs while not doing anything else to combat MS either! I believe that facing the diagnosis head on and creating a strategy to tackle it is absolutely vital.
I have met a considerable number of people who chose to take DMDs and disimproved rapidly while taking them, chose to come off them, and say they will never take them again.
I believe that there is a lot of hope for people diagnosed with MS, and that finding the root cause of why you got sick, and addressing that, is the solution to regaining health and staying well.
Best wishes for your good health!
I have to think about how miserable DMDs made my life in the present. I never did well on any kind of drugs, I don't even take OTC pain meds so this is foreign to me. I know its a conundrum and catch-22. Trust me, I am considering my options on a daily basis.
The only part of the article I had a question about was your statement all of the DMD's lower the disability progression. Where is that study? Almost all of the ones I see talk about reductions in enhancing lesions with a few on slowing the shrinking of our brains. I always question this because Tysabri has done a great job keeping me from having any flares as determined by multiple MRI tests. However, I still have new symptoms and new pains from MS. This makes me question the reliance on MRI scans to say a given drug is or is not working. Are their stats on disability progression on each drug?
Don't get me wrong. On Copaxone, the only exercise I did was row on a rowing machine because my balance was terrible. On the rowing machine I would only fall 6 inches. Now I am out running and recently ran a 15k. Tysabri has exceeded my expectations, and I would recommend it to anyone with MS if it is an option for them. Even being JC+, the odds of getting PML are still lower than the mortality rate of breast cancer patients getting chemo after a successful mastectomy (note I believe this is suggested for them as it lowers their long term cancer mortality rate).
Ps. My last MRI showed no new lesions nd my MS is not active at the moment :-)
I appreciate your insight regarding the DMDs. I have been on the fence, but I believe I am seeing more clearly now.
I finally got my appt. at UNM for the end of the month. I will see what the docs have to say and move from there.
Thank you for always providing insight into the uninvited guest..
I've just come off avonex after 5 years, and am in the washout stage trying to decide if I should start tecfidera or not.
My flu-like symptoms never ceased (though they improved) and I only now realise how horrible avonex was for my mood. The only reason I stuck with it (and the pulse steroids, and the cyclophosphamide) was my fear that if I didn't take the medication offered, if I didn't DO something, my disease and its progression would somehow be my fault.
I try not to regret anything, given the advantaged of hindsight, but I do wish I'd stopped avonex sooner, and I'm leaning toward not starting tecfidera. If people chose not to take a treatment, knowing the benefits and risks as much as they can - for whatever reason - I think they should be supported. Everyone is different in what they will tolerate, what is important to them. We cannot say the medication isn't helping for sure, but we can't really say it is in a particular case either.
Your blog was/is great. Your point of view on this topic is spot on.
However, I just can not do it; please forgive me. I am now 51 years old; ever since I was 11 years old, my health has been doing insane, crazy things, progressively getting worse. And I was diagnosed with PPMS in 1988. Every single time I have introduced a new medication to my body, crazy things happen. I am so sick and tired of being sick and tired. I want to spend at least a little bit of time with my wife, kids, and grandkids- I don't want to spend my entire life in a hospital throwing up, getting hives, being dizzy. I met the Lord once when I was in a coma for two weeks; He told me He wanted me to go back to Earth because I wasn't finished down here; after I woke up from the coma, I had to learn how to walk again.
I have created my own PPMS clinical trial. So, I am doing SOMETHING. Actually the clinical trial that I invented for myself isn't all that original - I am following the recommendations of George Jelinek's book, Overcoming Multiple Sclerosis.
But I can't take any more DMD's. Please forgive me.
Juggling two chronic illnesses is a full time job. Since the Lyme is much more urgent (and probably caused the lesions in my brain) and time consuming to treat, I've been focused on that. Between the drugs, the shots, bottles of xyz Rx, doctors appointments, support groups, etc. I'm out of time.
- Big pharma has until very much recently severly limited all research that is not geared towards the patenting of new drugs. Look at the initiarl results (that were consequently never followed up on) on Inosine, or high doses of Omega 3, or even Dr Cicero Coimbras success with a high dose vitamin d protocol, or even LDN for that matter.
- There are just as many studies showing lack of efficacy of the CRABs, as studies showing benefits of CRABs.
- There are several other lifestyle factors that in my opinion go a long way to help slow or stop progress: stress reduction, exercise, diet (low sat fat, no dairy or gluten, very healthy eating), rest, heavy metal detoxing, supplements, etc. However changing these is not always that straight forward, for many its far more "viable" to simply take the meds without manking any additional changes, that is a mistake. And of course, lifestlye changes require a lot of time and money.
- Its hard to accept that drugs can be ultimately effective for a disease that still has an unknown cause. However i believe they do benefit some people very clearly, but just as many they actually make things worse.
Im personally CIS for MS and have been for almost two years. Ive always said to the neuros that if i had advance in brain lesions or more relapses, than id start medication. HOwever one needs to look at lifestly changes you need to make: i had to greatly improve sleep, stress and nutrition, as they all needed a lot of improvemente.
I also take plenty of vitamin D daily and LDN.
I hope I stay this way, but if anything what all patients need to remember is that the DMDs are never the only solution. But for many it is an easy first call. In my opinion It takes a lot more dedication to make profound lifestyle changes than it does to inject yourself daily.
Great blog post and I understand and agree with your point of view on whether to take or not to take DMD's. I received my official diagnosis yesterday and my neurologist wants to me consider taking meds and have an answer ready for my follow up 2 weeks from now.
Maybe it's denial, but I am still not 100% convinced that what I am experiencing is MS. I honestly don't have an issue if it actually is MS…it is what it is and I'm fine with that however, without going into details, there are just a couple of dots that aren't connecting for me and so I am exploring alternate diagnosis and I think I will go see a second opinion. In the end it probably is MS, I just want to exhaust all resources and options first.
Hence my question for you is…what if its not MS? I would love to hear your take on taking DMD's prophylactically only to find out down the road that it's not MS. What are your thoughts on any damage/side effects that could possibly unnecessarily occur?
Also, what are your thoughts on pill form vs injection. Does your experience or knowledge support one method of DMD over the other? (Naturally I prefer to not be pricked with a needle again and again).
And you are not alone in the whole "are you sure it's MS doc?" Many of us diagnosed, including myself, were convinced it was something else--a pinched nerve, Lyme disease, a tumor, etc. Going down that path is normal. And who knows, you may be right. Worth pursuing.
As for MS drugs, these days I'm more bullish on being aggressive. The injectibles, while effective and quite safe, lack the pop of other oral and infusion meds. But as you know, the more aggressive you go, the higher the risk of complications. Tough call. But I do recommend starting on something. Good luck and hang in there!
Anonymous, thank you for posting that part. I knew it was somewhere inside of me. I just didn't know what to call it. It's another face of denial. Your post really brought it to light so thanks again!!
you decide if it's worth the 20 to 70 k per year to get poisoned or you change the food you eat
read about the Roy Swank study and diet.
Early life changes do not start until two to 5 years after starting the diet.
clinical trials were one year only and of cause not long enough to reproduce Swank's findings.
I am getting better after doing Swank diet.
I will never go into a wheelchair because of MS.
I just want to add my two cents as an experienced scoffer. I was diagnosed with RR MS in 2004 with just two lesions. I did go on Avonex, the newest at the time. It was two harsh for me and after a trip to the ER, I swore all MS drugs. I was lucky, I went four years without progression, then I was hit with a attack that cause 18 lesions over the course of one year in the cognitive part of the brain. Had no idea at that time that MS caused cognitive damage. Spent the better part of 5 years rehabbing after losing everything, job, school scholarships, direct care of my 9 year old daughter, home, and bankruptcy. I went on Copaxone and had no further attacks for two years. I moved to Canada from the US for family reasons and lost my funding for Copaxone for three years. I had a doctor who would not approve me for the drug with the excuse that I had to have had two back to back attacks in the last two years. So, during those three years in the latter two years, I began having attacks in the form of existing damage (my leg and stamina) getting progressively worse and a number of trips to the ER. This doctor refused to call these attacks because it wasn't new damage. I fought to change doctors and got one of the most experienced in Calgary and a one of the foremost researchers on MS treatment out there. He got me back on Copaxone immediately. I am beginning my second year back on the drug and the attacks have stopped. I wonder what could've happened if I had only gone on copaxone after the disaster with avonex which is tolerated by others, all those years ago, if I could've avoided the horror show that happened in 2009. Thanks for the article, very important
Over the last two decades, the RRMS has become SPMS and all I have been prescribed is Baclofen - which my body couldn't handle - and Gabapentin, which I took until a few weeks ago when my neurologist wouldn't continue to prescribe without a visit that I'm reluctant to make mid-pandemic. I'm now in the US, and the neuro was amazed I'd never been prescribed DMTs back in the UK - the NHS is usually good but does run a 'post-code lottery system' for supplying drugs: if you live in the wrong area, you won't get them. Same with Sativex, the cannabis-derived oral treatment.
Anyway, on my last visit to the US neurologist, he felt my SPMS was so inactive, treatment would be ineffective. And I'm retired so unable to afford the ridiculous medical costs - I'll only become eligible for Medicare in 2021...if I can afford the basic cost even.
So, guess I'm a warning to others - or I fell through the cracks in two systems.
This was literally the pep-talk I needed right now 😅
I started DMT in 2018 with Copaxone (not effective for me, new lesions), then Tecfidera (severe lymphopenie) and just recently had to give up Rebif (side effects held on for over 4 months and finally gifted me with a night at the hospital).
So now I can choose between Aubagio and Zeposia and, in the last days, had sometimes a hard time coming to terms with another medication and other potential side effects.
But as I constantly repeat to myself: I am in it for the long run!
So your post hit home. Thank you very much!
Anyway, after that long rant-ish post I'll say, thank you, Dave, for offering a different perspective. It's definitely given me something to ponder.
I am now 62 years old with Secondary/Progressive MS, and taking Ocrevus twice yearly. It has come up with my doctor that once you’re a certain age, if you feel the drug is not doing anything for you, to stop and just stay on your maintenance drugs. I’d like to know your feelings on that. He was going to put me on Mayzent, (approved for Secondary/Progressive), but with COVID, he is hesitant..
What are your thoughts on HSCT (Hematopoietic Stem Cell Transplant)? I have had MS for 34 years, and am now SPMS. I am considering HSCT. Do you know where in the US it is available?
great article ,too bad more people would go to homes of people who have to be taken care around the clock and see what has to be done for them...good one ....i believe everything that you write about on you pages for they are so true for me and many more...yes i have tried several different drugs and not much help but i have finally found what works for me the infusion of Ocrevus...yes i do understand that it isn't a cure but it has helped me so much...yes if they could meet and talk to someone that is in a bad way with their MS where some one has to do everything for them for they never had the choice of a drug to slow it down they could talk and maybe explain to them what it had been not being able to do anything anymore then maybe some would listen to you...good luck ...keep on writing these great articles ...thank you so much...have a wonderful Christmas ...love and much happiness to both of you..take care and stay safe...
In all these years.... he seems to think that the Parkinson’s disease is causing me problems not the MS...
Copaxone is the only MS Med that I tolerated....
What are your thoughts?