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

36 comments:

Anonymous said...

This is a great post and much-needed.

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

becky said...

What a great article. This was so timely for me. I have tried several of the meds and am currently on Tysabri. However I am still getting lesions and progressing. There is no way I will stop because of the possibility of it slowing the progression. I sure don't want to stop and look back next year and say I should have stayed on my meds.

Dave Bexfield said...

Becky, Anon—I'm glad to see this post is making a difference. I've already gotten e-mails, too, with people calling their docs to start (or restart) treatment. I just wish those with PPMS and SPMS had more options. Keep moving forward!

Anonymous said...

Dave, Hi, I am one of those you mentioned that have PPMS and, therefor, have really no FDA sanctioned treatment options. I guess, being in the minority, as far as being in about the 15% of the MS population gets you 'bupkis'. But I find your blog on the DMD's really strong and thank you for not 'sugar-coating' this stuff. I can tell you , without any reservations, if a case could be made for me to take Copaxone or Tysabri, I would do it until I found that it was doing my health harm or no effect at all, which is common. I go to just about every MS info dinner in my area and listen to the neurologists give their findings from their clinical work and there is never any mention of HSCT. I know its out there. I can name some of the patients who have had the treatment. I am sure you know who some of these people are. But it still remains a secret to the majority of us who battle this 'beast ' every day. Thank you and George Goss for your very vocal support. Any info you disseminate gives all of us 'hope'. And that's saying alot!!
Jerry

Anonymous said...

Thank you so much for this post! I was diagnosed about 2 years ago and have been on Avonex ever since. It's terribly expensive and I've often wondered if I should stop it, and have been told by others that I should 'stop this expensive drug' and try 'alternative treatments like yoga and ayurveda', and of course the people who tell you 'I know this lady who had the same problem- she went to a vedic doctor, and now she's perfectly fine'.
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.

Dave Bexfield said...

Anon—I have no reservations about CAM therapies... if they are affordable (or free) and don't take the place of therapies that have been proven to work in clinical trials. Keep it up! And Jerry, you already know how I feel about PPMS. It's maddening how tricky it is to manage. While HSCT might not be the answer, at least it fuels hope. Hang in there.

Anonymous said...

Thank you for this post. I'm still not clinically definite (that will probably change soon) and I have resisted medication. Your post exposed most of my wilful blindness around this issue. Basically if I don't take drugs for it, it isn't happening - right?

I'm glad the stem cell treatment worked for you.

Dave Bexfield said...

Anon—No one likes to be on meds. But the FDA-approved MS treatments do help. And just to be clear, the stem cell transplant is working for me, present tense. As with everything MS, tomorrow is hard to predict.

Anonymous said...

Hi Dave. Thank you for taking the time to publish this post. It's clear that you are really passionate about people with an MS diagnosis staying as well as possible, and encouraging people to face the diagnosis they have been given. That is a refreshing approach! I agree with you that MS is an illness that can be treated, and I have some other ideas about how that should be done :-)

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!

Carla said...

For some reason, I missed this post when I first discovered your blog a few months ago. I am on LDN right now. I know its not an FDA approved DMD and I am closely monitoring my progress or decline since I started the drug in spring 2011. I was diagnosed three years ago this month and started Copaxone with horrible side effects for four months solid - daily. I could not exercise and power lift- the one thing that keeps me feeling alive when I was on it the drug. Avonex made me want to stick a knife through my head and jump off the Burnside Bridge.

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.

Dave Bexfield said...

Carla & Anon, nice comments. I just wanted to start a conversation and to have folks think (and perhaps rethink) about decisions that may have lifelong consequences.

Carla said...

Thank you again, Dave.

Anonymous said...

I love and agree with everything you've said. Thank you! I sometimes feel like I have to defend my decision to take Copaxone. There are people who truly believe that "Big Pharma" (I hate that term!) is only there to profit from our illness so why would they want to honestly help us. These same people have the same opinion of doctors. I've had to argue that I am not putting "poison" into my body-seriously! At first, having to have these discussions upset me, now I've chosen to let them strengthen me. The harder they push, the harder I push back. Now, if I could only find someone or something to push me to workout more..... ;)

Dave Bexfield said...

Um, Anon, you better be working out more. Seriously. Get exercising. No, not later. Today. Now. Hop to it! - Dave

Anonymous said...

Wonderful post. I'm recently Dx'd and read everything I can about treatments past, present, and future. My conclusion was that it's absolutely foolish not to take a DMD. I've been wondering why nobody else was saying that outloud. And now you basically have. Thanks.

the life well lived said...

I agree about the importance of treating MS. I have been on Tysabri for 64 infusions and have past the outer limits of the clinical trials for safety and efficacy of the drug, but I won't stop until I am forced to or something better comes along. I have long said give me 5 good years over 30 crappy ones.

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).

Dave Bexfield said...

TLWL, there are a number. A recently published study by Italian researchers (title: Immunomodulatory therapies delay disease progression in multiple sclerosis) found in 1,178 patients with RRMS that "the risk of secondary progression was significantly lower in patients treated with DMDs" and concluded that "DMDs significantly reduce the risk of multiple sclerosis progression both in patients with initial high-risk and patients with initial low-risk. These findings reinforce the role of DMDs in modifying the natural course of the disease, suggesting that they have a positive effect not only on the inflammatory but also on the neurodegenerative process." Here is a link to the full abstract on our forums.
http://activemsers.wssnoc.net/showthread.php?t=959

Todd Walbridge said...

Dave Excellent post, I shared if you don't mind

piinguiis said...

Dave love ur post I was diagnosed 2 yrs and a few mo ago... when I was first diagnosed I was put on copaxone, the side effects weren't that bad plus they seemed to get better as time went by... after a year of taking copaxone I did not notice the meds were working for me I was still very fatigue, sleepy, tired, numb, I was experiencing a lot of dificulties walking, and spent more time on the floor than on my two feet. :) I had my yearly MRI done and the doctor found that I had new lesions and my MS was very active so he put me on Rebif. I HATED IT!!! The side effects were awfull nd I just redmdember crying to my neurologist telling him how much I hated this med... all I remember him saying was "I know its horrible,but u got to chew on a bullet a little" I guess he was right it took me an entire year of taking rebif and sucking up to the side effects to realize that there was a reason for why he said what he said... I was on rebif for a year and a few months, I can now walk (2 miles on a tredmill) I'm pain free and not the same way as I was a year or two ago.. I been off rebif for two weeks now because I'm going to try to have a baby, but to be honest I am now very affraid of beeing off the meds...

Ps. My last MRI showed no new lesions nd my MS is not active at the moment :-)

Alex said...

Thanks Dave. The fact is, there are no facts regarding whether the DMDs reduce disability at all. Yes, they are proven to reduce exacerbations and MRI activity. However long term studies failed to show they make any difference in the long run. So your arguments make sense, but only if the DMDs actually do anything. That's an important if.

Dave Bexfield said...

Understood, Alex. There was that one Canadian study that called older DMDs into question (conflicting with an Italian study that found the opposite). But then a large Swedish study released late in 2012 concluded that those same DMDs did actually delay secondary progression. Putting off SPMS is critical, as the biggest advances in MS research are focused on the easier-to-treat relapsing phase. Here's a link to the abstract:
http://activemsers.wssnoc.net/showthread.php?t=1126

Stacy Rogers said...

Great blog! I love life and if my DMD gives me one more day, I'll take it.

Kristin said...

Thanks Dave, just found your blog and so glad to see someone speak out on this subject. I also see daily attacks from some med free folks on the evils of big pharma and greedy nueros. I respect that going med free is a personal decision, but as these seem to be the most vocal folks out there on the subject, I worry that alot of MSers don't get the needed info on the benifits of DMD's.

Brenda Solis said...

Thank you for your email tonight that led me to this blog. I had not seen it yet.

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..

Bree Solis

Dave Bexfield said...

Thanks Bree. I'm not saying DMDs are the answer, but at least giving them a shot (no pun intended) is worth the potential side effects.

Dave Bexfield said...

And Kristin, thank you. I agree, all of us with this disease are influenced by outside opinions. I just want to provide a more thorough case for considering DMDs.

treatment for dvt said...

You have an interesting point here. I've been reading some of your blogs for quite a while now and I am so happy that you were able to share them to us. Thanks and have a nice day!

Megan Adams said...

Great post. It definetly hits home with me as I am currently on the fence about wether to continue with DMDs or try without them. I can not take the Interferons - I have an adverse reaction to them that makes it seem as if I'm progressing rapidly, though there are no new lesions and when I stopped them all of the new symptoms went away. I have been on Copaxone for a year. I have welts that don't go away for weeks. Between the skin discoloration from the shots and the 3+ long week welts I am running out of places to inject. So now is the choice of moving to the pill options (which all scare me) or trying my luck with strict diet, exercise and LDN without any DMDs. You make good points and I have a lot to consider before making my decision.

Anonymous said...

Very interesting post.

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.

Anonymous said...

I'm fed up w/ injections after 10 years, but your article has sufficiently shamed me to continue on. Thanks for the kick in the butt. I needed it. Ugh...

Dave Bexfield said...

Anon, I know where you are coming from. And after all of the research I've read in just the last year, I am more enthused than ever to kick a little tail in this department. So glad that my foot got introduced to your ass.

Anonymous said...

Dave -
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.

Dave Bexfield said...

No worries, Anon. The above post was only intended to gently harass those with relapse remitting MS, which I put in the first sentence. Keep on keeping on as best you can. Sounds like you are.

Carla said...

I've been following this post since it was posted a few years ago and so much have changed since I've read this. I was diagnosed with chronic Lyme disease 15 months ago after having lived with and treated my MS - diagnosed almost 6 years ago.

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.

Dave Bexfield said...

I understand, Carla. Keep hanging in there. I'm not going anywhere. If you need anything, you know where to find me.

Carla said...

Thanks, Dave!