Why Aren’t You Using an MS Medication?

Why Aren’t You Using an MS Medication?

 

I see a lot of answers to the question about why people stop, or refuse to start, an MS medication.

 

“Thinking of stopping the…meds. Sick of the shots and how they hurt to take them”

“I stopped all of them….all multiple times. It takes too long for an appointment and I tapered off “

Half the s**t will kill you”

“My body and my choice”

“The side effects are worse than the disease”

 

Forty percent of people being treated for MS stop using their disease-modifying therapies (DMTs) less than three years after they start them, according to a study published in the American Journal of Managed Care. I’ve been using a DMT since Avonex first became available in 1996. (I moved from Avonex to Tysabri, Aubagio, and finally, Lemtrada). So, I find it hard to understand why someone wouldn’t want to try using a DMT that might stand a good chance of slowing, or even halting, the progression of their disease.

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Why do people reject using MS medication?

 

The most common reasons, according to the AJMC report, is that people think a DMT isn’t helping, or won’t help, them. Or, they’re worried about possible side effects. However, with 15 approved medications in the U.S. (the number may be different in other countries), it seems unlikely that a medication fit couldn’t be found. (I have heard a few people say that nothing has worked for them.)

 

So, what’s the hang-up?

 

One of the hang-ups is money. The report says that 14 percent of the people who reject DMTs do so because they can’t afford them. But for a much larger group, the hang-up wasn’t considered to be rational. Over 42 percent of the 78 people included in the study declined a DMT because they couldn’t admit to themselves they have a serious disease. They “cite irrational reasons for avoiding DMTs as an avoidance coping strategy to downplay perceived disease severity and/or avoid being constantly reminded of their disease,” the study said. A very small number, about 6 percent, thought they didn’t need the medication because they considered the course of their MS to be “mild.” To me, that’s similar to avoidance coping.

 

Is this another example of the ‘gambler’s dilemma?’

 

This mindset seems to be similar to the “gambler’s dilemma” that I wrote about a few weeks ago. It’s a term used by Prof. Gavin Giovannoni, who writes for the Barts MS Blog.

An MS patient may think they “will be the lucky one that will win,” Giovannoni writes. “Someone with MS is never going to have bad MS, they are always going to be the one that ends up with no problems in the future, therefore, they don’t need more effective treatments.”

 

Are they right to reject treatments?

 

I don’t think they are. I suspect that most medical professionals wouldn’t, either. So, if a patient is in denial about MS — is “gambling” that it won’t worsen — should a DMT be pushed?

 

The study reported in AJMC concludes: “Further research is needed to develop means of identifying patients who are not taking DMTs for avoidance coping reasons as well as strategies to promote initiation or re-initiation of DMTs in this patient population.”

 

Should “strategies” be used to push a medication to a patient who a doctor feels is avoiding coping with MS? What do you think?

You’re invited to visit my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

 

64 comments

  1. Ha. Hamed says:

    Hi . I wrote several times that the main cause of MS disease are the preservative materials . I cut out them since 2002 . Just eating a natural food and drinks . 0% progression .

    • Stephi says:

      I agree. I did Copaxone for ~8 years, then Avonex & my quality of life got worse on Avonex. When I saw my MS doc she said I had progressed anyway so stop the dang stuff. Feel oh so much better! Being 68 I am ok with slow progression & no meds.

    • Ed Tobias says:

      Lara,

      Thanks for your comment, but I implied nothing. I wrote about research that reported on some reasons that people decide not to use medication.

      I agree that medication is a personal choice. But, as I wrote, “I find it hard to understand why someone wouldn’t want to try using a DMT that might stand a good chance of slowing, or even halting, the progression of their disease.” That’s not pushing medication. It’s simply my opinion.

      Ed

      • Nichola Ryan says:

        I find it hard to understand why you think that the DMDs work and why you don’t get people who don’t want MS medication. There are many reasons not to go on toxic MS medication.There is the rebound effect if one HAS to go off them for any reason. Also all of the betaferons make people feel terrible and have dubious stats. Then there’s Copaxone. Itonly has 30 per cent efficacy — that means it only works for 30 percent of people. Tysabri is so dangerous that is was banned after 8 people died and only returned because of the pharma lobby. People don’t want these drugs because they feel like pharma guinea pigs on them. long term effects of Gilenya are yet to be understood but the short term effects are that people get colds an flus more frequently and find them hard to shake. The Swank diet was a well documented 30 year study into sat fats and MS — that diet seems a much better option than MS drugs, to me. There isn’t :a good chance” of slowing or even halting the progression of MS on these drugs. There is NO CLEAR evidence that any of them do much, apart from copaxone, which, as I have already state, only has 30 per cent efficacy. I think you actually ARE implying something with the way you have put our question. You are implying that people who don’t take them are making an uninformed mistake, or taking a risk. I suggest you read “Overcoming Multiple Sclerosis” by George Jelinek and get a wee bit informed before you mouth off.

        • Ed Tobias says:

          Nichola,

          I appreciate your taking the time to comment but I disagree with you.

          I’ve lived with MS for over 28 years and have been treated with several DMTs. My experience has been that Avonex may, or may not, have slowed my progression. But I had no relapses and no side effects while I was on it. I believe Tysabri, which was voluntarily taken off the market in 2005 for about 18 months, slowed my progression. I had no relapses and no side effects. It’s proven to be an effective treatment with minimal problems when patients’ treatments are carefully monitored. On Aubagio I had minimal progression and no side effects. On Lemtrada my progression has halted and there has been a slight improvement to some symptoms. Its side effects have been minimal.

          Though I do find it hard to understand why some people disregard all medicines -including the measles vaccine, which has resulted in new outbreaks of a disease that should have been eradicated long ago – I realize that some people are like that. If diets or non-traditional treatments work for them, I’m pleased. The object of what I wrote was simply to report on interesting research about the reasons people choose to stop, or not to begin, DMTs. And to share my own, informed, opinion about that.

          Ed

        • Claire says:

          The reason that Tysabri was taken off the market for a period of time was due to the catastrophic incidence of progressive multifocal leukoencephalopathy (PML). They were able to identify the presence of the JC virus in those that succumbed to PML after being treated with Tysabri. Regular screening for the JC virus now allows MS patients to safely be managed on Tysabri, so long as any other side effects are tolerable. I think it is also important to respect people who do use DMTs, and not assert ignorant opinions about the medications of choice. Take DMTs or not, but let’s respect everyone’s choice.

        • SarahC says:

          As a person with MS and a scientist I need to respond to the misinformation. “Then there’s Copaxone. Itonly has 30 per cent efficacy — that means it only works for 30 percent of people.” That is incorrect. First of all, it slows relapses by 30% on average over everyone. But it doesn’t work for all patients. Some patients respond better to other drugs. Also Copaxone seems to increase in effectiveness the longer you take it. But your conflating the effectiveness with the percentage of people it works for is incorrect. Secondly, “Tysabri is so dangerous that is was banned after 8 people died and only returned because of the pharma lobby.” Tysabri is dangerous, however it is also effective. For people with very aggressive MS it can be a life-saver. With ALL MS drugs one needs to balance the risks with their individual case. Someone with a very aggressive MS may opt for HSCT, Lemtrada (Alemtuzumab), Ocrevus or Tysabri. All have more risks but are much more effective. Someone with a mild or benign MS may opt for Copaxone, which is less effective but very safe. So many people here are conflating causation with correlation. Anecdotal reports of symptoms worsening after treatments are unfortunately often highly influenced by our own interpretations which is why you need a double blind study where the patient doesn’t know, nor does the doctor, who is one which treatment. I know of a woman with MS who refuses all western treatments, who has claimed her MS to be “healed” but also has persistently declined and now can not walk, all the while thinking she is doing better than with meds. Truth is, she never tried medications, she probably would have been better being on a DMT, but she has convinced herself she is well despite all the objective indicators to the contrary. I’ve also had a good friend die of a very treatable cancer treatment for the same reason – the misguided belief that western medicine is evil. The reality is treating MS is hard, doing proper research to tease out effective treatments on a complex disease is hard, and DMTs don’t offer anyone a guarantee, so people then sometimes gravitate to a guru who claims to know how to heal them. For some with benign MS this is fine, for the rest of us, this is dangerous.

          • Ed Tobias says:

            Thanks for taking the time to write this, Sarah.

            Misguided beliefs about medical treatment are dangerous. Not only about MS and cancer meds, but also about flu and measles vaccines.

            I appreciate your scientific view.

            Ed

      • Shauna Pearce says:

        Hello Ed this is the first time I have posted. I first need to tell you my back story. Before I was diagnosed with my I was dealing with the aftermath of a car accident and the never ending pain. I had been on many different medications and had bad side affects with most of them. When I was dx’ed with ms I really didn’t understand this disease even though I knew some one with it. At the time of my dx I really didn’t get an education or support from my doctors as to what to expect but I did know that most of the medications were injections that there is now way in any reality in any universe that I am able to self inject I have a real thing about needles. I did try avonex for 3 months(I had to go into my dr’s office for the weekly injections) and the side affects were terrible and I was unable to cope and the cost was unexceptable. My lesion have been stable for the whole 19yrs but I do have symptoms and weaknesses that now keeps me from working plus I have never truely recovered from my car accident (I was a massage therapist and I focused on injury rehab not the frufru fluffy spa massage). June 2018 was the very first time a doctor classified my ms as primary progressive. I don’t take the medications because of the cost and the side affect plus my families collective medical history which is filled with cancers and alzheimers which I choose to avoid. If ms was to take me before Alzheimers sets in then I am totally fine with that. Currently I don’t see a time that I will be willing to medicate.

        • Ed Tobias says:

          Hi Shauna,

          Thanks for taking the time to share all that and I’m sorry for all that you’ve gone through.

          You’re not alone in having been left to fend for yourself after your diagnosis. It’s unfortunate that too many doctors fail to educate their patients about what they should expect with their disease.

          There are a lot of treatment choices for dealing with MS. In the case of medications, most pharmaceutical companies have programs that will pay for most, of not all, of these meds for people who can’t afford them.

          But, it’s certainly an individual decision. I wish you well with whatever path you decide to follow.

          Ed

  2. Jay says:

    I had HSCT as soon as I found out I was diagnosed. Not in America because we’re backwards. We are the last nation that is doing this – why? Every other nation is doing it. I repeat, every other nation is doing it. Such a shame that this is happening.

    • Janet says:

      Jay,
      How difficult was the HSCT? Are you well? Where did you have it done and did you have to pay out of pocket?
      Would appreciate any info you can share!

      • Jay says:

        Not hard at all. I think as long as you get it earlier the better. I’m dumbfounded that America’s is the last country (read that again, we are the last country) to do it. Two places that come to mind are A.A. Maximov and Clinica Ruiz (to name two). I called Dr. Burt at Northwestern but he said that I had to take a drug first. I said thanks but no thanks. If you leave the country, you have to pay because the pharma companies run the show here. There’s no reason that they should this to people. Also, modify your diet that Nichola Ryan (he posted above mine) recommends. I hope this helps.

        • John says:

          Jay,

          As an MS specialist, I am questioning whether you truly had HSCT, or ‘stem cells’ as people like to call them.

          HSCT involves the use of potent chemotherapy FIRST, then stem cells are given as ‘rescue’ to allow for patients to have a functioning immune system. These stem cells (contrary to popular belief) DO NOT then magically enter the brain and spinal cord to heal/cure MS, rather it’s the destruction of immune cells (from the chemo) that apparently mediates the effect on the immune system. Some HSCT studies show mortality rates near 1% due to its toxic effects.

          The irony here is quite deep…stem cell therapy is the MOST dangerous of any treatment for MS, assuming chemo is given on the front end.

          Everyone on this thread should be highly suspicious of receiving “stem cells” in a foreign country, as many of these sites plainly rob patients of money. At least pharmaceutical companies have to prove their therapies are effective in the time honored scientific double blind placebo controlled fashion. There is NO study (repeat NO) that shows in a double blind placebo controlled fashion that diet, Vitamin D, or any other ‘natural’ means of treating MS is actually beneficial. While some of these things may be helpful, they cannot be used in isolation as stand alone treatments.

          • Jay says:

            John, America is the last nation that is doing it. I did do chemo (which is what kills it) and then stem cells (which helps you to recover). Such a shame on America, their beholden to drug companies because they can’t charge for this. They lose 1% of their patient base with this procedure? They first are seeing people who have tons of issues and second the majority of American don’t know about it. How many people with MS do they lose to MS, John? Such a shame. A real shame.

  3. Bill says:

    I have ppms and am not using any disease modifying medications because of the limited treatments for my type of MS. The MS I have was diagnosed when I was in my mid 30s in 2014 and is aggressive. I have tried off-label rituximab which seemed to be okay at first but have had insurance issues after changing. I have also tried ocrevus which gave me bad side effects immediately after the infusions lasting for a month or more. I would have to use a walker after infusions and and get numerous bladder and skin infections. I have stopped that because all it is is rebranded rituximab that is supposedly more easily tolerated. There are many available dmts for people with rrms but not progressive as we know. Maybe something better will come along in the near future such as remyelination therapies but as for now, what can people do if they have a severe form of this disease? The choices are so limited and if the side effects are negative and the potential side effects in the future can be negative and are also unknown because of the treatment being a new drug, other approaches to treating symptoms such as Botox therapy for walking, etc are much more beneficial for me. I wish people would concentrate more on studying the disease and treating or curing it instead of how many people stop dmts. This seems like a waste of time and money. None of us with MS have time to waste. Hopefully something will come along in the near future that is better and not so expensive and doesn’t have insurance issues so we can all receive the proper care and treatment. As for now all we can do is cross our fingers.

    • Ed Tobias says:

      Hi Bill,

      Thanks for sharing all of that.

      I have two, brief comments. First, though I think that many studies are a waste of time and money I think that trying to understand reasons that people have for not using, or continuing, a DMT is useful knowledge. Also, have you considered Lemtrada? Although it’s not officially designated for progressive MS, I know that it’s being used to treat SPMS and that it’s been successful in halting its progression. It’s also improved symptoms in some people.

      Let’s all hope that the several studies that are trying to find ways to remyelinate our nerves are fruitful sometime soon.

      Ed

  4. Vivian Callender says:

    Diagnosed at age 52 despite having MS symptoms my entire life. Fell in 2010, to ER, received first CT ever, urged to see a Neurologist immediately as scan showed demiliating(sp) disease consistent with Multiple Sclerosis. I fell on a student while continuing to teach in 2012 resulting in trauma to the student and for me, a 2 two week hospital stay. After that, I submitted to at least getting a firm diagnosis of MS. I immediately began the disability process, found a Neurologist, MRI’s with/without contrast and lumbar puncture confirmed RRMS. Given my age, 52 and late diagnosis, my Neurologist decided to hit hard and ordered a 5 day, 3 hours per day outpatient Infusion. Felt wonderful afterwards but that type of treatment could not be sustained. I was prescribed Rebif 44mg, self injection 3x per week and used this medication way too long, close to four years. During this time, I was in and out of the hospital for numerous UTI’s, and two debilitating relapses. Finally, I decided the main ingredient of Rebif, interferon was no longer for me. Next was Glatopa injections, which within a month, experienced, vitrious bleeding and a hole in my retina requiring surgery. My vision has never been the same as still have large floaters and flashes. Next, Tecidera which after one week could not lift my head up, had intense migraine, loss of appetite and lethargy that was worse than the fatigue associated with MS. Hence, as of August, 2018 I no longer take any DMT of any kind. The August 2018 MRI’s showed absolutely no change since the baseline MRI’s of 2012. Never experienced the remission my docs anticipated with the use of DMT’s. Perhaps, given how long have had MS prior to diagnosis, have already had my remissions. I feel OK and am far more functional albeit challenged on a daily basis. However, have NOT been hospitalized since ending my use of DMT’s nor have I had a UTI. I visit with my PCP and Neurologist accordingly. My own research has disclosed the fact that those diagnosed over the age of 50 do not experience the benefits of the DMT’s as well as those diagnosed and treated before the age of 50. I tell folks that my disease caught up to the technology, am grateful for being finally diagnosed and the availability of meds to provide treatment. I am certain I am now in the Secondary Progressive phase of MS. That is my story and I am sticking to it.

    • Ed Tobias says:

      Hi Vivian,

      Thanks for sharing all of those details with us.

      I’m sorry that you MS progressed the way it did but I think, as you’ve written, the disease caught up with the technology.

      I hope that you continue to remain stable no matter how you choose to treat your MS.

      Ed

  5. I tried for 10 years, several different approaches, my MS continued to worsen and some of the side effects were showing up in my lab test and EKG. That plus the expense and hassle insurance companies give you made me give up on them. I am currently in stage ll.

    • Ed Tobias says:

      Hi Brenda,

      I’m sorry about your progression and I certainly understand your decision. Your experience seems to match what the researchers reported about people who stop their meds because they weren’t effective.

      Ed

  6. Carole Ginther says:

    Copaxone caused severe hives for 5 years. Got to the point where I could not inject w/o a dessert plate size welt so I discontinued my daily injection. After the hives were under control I did not restart my DMT. That was in 2008. Haven’t had hives since. Could be anecdotal but I am not willing to play with that fire again.
    I

    • Laura says:

      I took Copaxone for 5 years. During that time I still had some relapses, but nothing that didn’t resolve itself with time and steroids.
      My problem with copaxone was that it messed with my periods like crazy. Before copaxone, I was clockwork every 28 days and easy periods. During/after copaxone, I had such severe pain and lengthy, super heavy periods that I would have to stay home from work one day every month to cope. I also experienced super dry eyes and a general feeling of constant depression.
      These are not “typical” copaxone symptoms and the company would deny that it could be the drug every time I would call in and ask to speak to a nurse.
      I also dropped weight and could NOT gain while on the drug. (I’m 5’6” and weighed 112 during that time.)
      I took my life back and stopped taking it. After about 6 months, my periods started to regulate again. I have since gained 8 pounds and look so much healthier. Eyes are fine-no longer require drops every few minutes to wear contacts.
      None of these are proven/publicly reported copaxone side effects, but I did not have them before and have not had them since, so I firmly believe copaxone was the cause.
      I am currently not taking a DMD.

      • Ed Tobias says:

        Thanks for that information, Laura.

        I’ve read of women complaining of similar problems after starting a DMT, but I’m not sure whether it was Copaxone or another. I would note, however, that there are more than 15 DMTs that are available in the US, and a similar number in most other countries. Have you talked with your neurologist about whether a different one might be beneficial without significant side effects? I’ve been through Avonex, Tysabri, Aubagio and Lemtrada. Fortunately, the side effects have been minimal, or none at all, and I think that each has provided a measure of help.

        Ed

  7. suz says:

    All the DMT’s made me sicker than disease. I was put on dozens of other drugs to combat the side effects of DMT’s.
    Then got breast cancer (not genetic).
    So I stopped everything. Went natural & doing great. Feel like I lost 20 years of my life.
    Now living again!

    My neurologist is stumped. I have no symptoms.

  8. Rhonda says:

    Hi Ed!
    I was diagnosed three years ago (Feb 22nd, 2016). I have fatigue, weakness, tingles, numbness in my hands, especially my left (I’m left handed of course) and tingles down my lower backside. I had to learn to walk, brush my hair and teeth all over again! It was especially hard because I am a chef by trade and had to give up my passion or so I thought!

    I have the most wonderful doctor! She isn’t a hand holding type but more of a researcher. I am grateful for having found her since I have moved to CA. I had been trying to figure out what was wrong with me, exactly, three years before 2016, when I live in Chicago. Saw the best doctors at Northwestern. Until I moved to CA, no one really gave me a straight answer. Keep in mind, I did have one lesion in my cervical spine while living in Chicago. Let’s move fast forward to today. After officially being diagnosed with Relapsing MS, I have tried three medications, Copaxone 3x a week (lasted three months because it really hurt, Tecfidera (last a year and a half then had a bad reaction to it, and now, I am on OCREVUS. (I have the JC Virus so my options are limited) I was NOT about to give up. I was doing well on the Tecfidera and liked just taking a pill, but after the reaction I had, it was time to let that one go. My doctor wasn’t about to give up, either. Not only did she want me to try the OCREVUS, but also Plasmapheresis. (it’s like dialysis but without the medication) Yay! More needles and pokes! 🙁 BUT, I am happy to report that I am going on my second year of the OCREVUS and have done 50 treatments of plasma and I couldn’t feel better!!! I can hold a knife again and have been about to cook for my family! I horseback ride, hike, and do kickboxing. I know it’s not for everyone, but I wouldn’t have it any other way for me. I wasn’t about to start my 50’s feeling sorry for myself, which creeps up every now and then, and just start living my life as a “NEW” normal with MS. I also do döTerra essential oils, which help a great deal too!

    Please don’t lose yourself to this STUPID disease!!! Positive and mental attitude are everything, I believe! So, if I need a little extra help with the medication, so be it! Remember, MS IS BS and you MUST stay STRONG!

    • Ed Tobias says:

      Hi Rhonda,

      Thanks for your comments and I’m very glad that you’ve found a treatment that’s helping you.

      It’s sad to say but it’s very difficult to find a neurologist like the one you found in California. I’m fortunate to have one who seems similar to yours.

      Best of luck to you,

      Ed

    • Gia Cannon says:

      What side effects did you have from Tecfidera? I only have flushing a couple times a week but I can handle that. I had a bad reaction to the Copaxone though.

  9. Cara Hirsch says:

    With all due respect, don’t you think it best to interview & quote actual MS patients? Instead of “Prof G,” who by the way is one of the most arrogant practitioners I’ve come across.

  10. Jay says:

    People have to be responsible for their own lives and choices, or we would live in a very dangerous society. What would the “punishment” be for refusing meds? That would take us down a very scary road. Very totalitarian.

  11. Pat Kipf says:

    Diagnosed 3 yrs ago with ppms, now 59. First two docs ” well theres nothing to treat you with yet”. Along came ocervus, after 2 treatments i went from walking with a cane to a walker or scooter, stopped ocrevus. Have no doctor offering anything accept steroid infusions. Lost entire left side, now in chair and losing right side use. No drug study wants someone as far along as I am and no doc has any thing to give me.

    • Skair B says:

      Hi pat.
      Just a newly diagnosed browsing this page.
      I did notice that your mail wasn’t responded to….
      That not cool
      I guess, do what I do and be a constant pain to everyone as often as possible?
      Why wouldn’t you be included in a drug study? PPMS patients are the most urgently in need of help…
      Following….

  12. Denise says:

    For me it is the delivery.
    I am not against the drugs but I am against making a rash fear based decision so I am taking my time.
    Back to delivery, even though we receive an educational session regaurding our disease and the different medications, how they work etc.
    The fact remains, the evidence does not seem to be definitive enough for any neurologist to say take this it will make u better.
    So what happens is, a bunch of us people who have just been given a scary diagnosis with a vague prognosis (people with varying levels of actual brain damage and likely no medical background might I add,) are handed a list of medications and told to pick.
    We are told this is science based and nothing else is so be smart and pick one.
    This list including interferons who’s efficacy seems spotty, why are they still on the list?
    So, here is the list, I can’t tell you which will/won’t work etc, but u must choose something or else.
    Meanwhile, for most of us Canadians, any prior experience with illness in and around us has been, you have such and such, take this and feel better, end of story.
    If people went to the doctor with an infection and the doctor said, here is a list of meds, you should probably take one, chances are you will feel better at some point but even if you do feel better it could be a coincidence…. Oh, keep in mind it could also make u worse….
    I suspect the general population would respond the same way.
    There is a lot of better, more clear research coming out but the majority of fellow MS sufferers I know have no interest/ability to read these papers objectively so they/we are in a really difficult position.
    Something for the neurologists to consider really…..
    I can’t beleive I am leaving such a long message but this is a frustrating one for everyone and the reason is so obvious to me.

    • Ed Tobias says:

      Hi Denise,

      I’m glad that you took the time to write all of that. I’m also sorry that you’re doctor handed you a menu and left you on your own to make a selection.

      I’ve been very fortunate to have had a neurologist who has always told me which medications are available, provided an objective look at the risks and benefits of each, took the likely cost into consideration (here in the US) discussed all of this with me and then left the final decision up to me. I’ve written a number of times about the need for better doctor – patient communication and a partnership between the two. It’s a shame that doesn’t happen as often as it should.

      Ed

  13. Sherri says:

    I was diagnosed in 2006, although looking back, I suspect I had my first MS flair in 1987 when I was 15.

    My experiences with the DMDs hasn’t been a good one. I started on Avonex. That caused petit mal seizures. I was then switched to Copaxone. That’s the medication I believe caused me the most disability, and unfortunately led to the end of my nursing career. I was having exacerbations every 4-6 weeks: optic neuritis, diplopia (double vision), oscillopsia (where everything in your vision moves like the credits at the end of a movie), severe vertigo and I needed a cane to walk for mobility and balance.

    Tysabri was next. Although I did better on that medication than the others, my immune system was crashing after two years and my neurologist pulled me off. My JCV titer was 4.3, so going back on it again was off the table for me according to the neurologist.

    Afterwards, I went on low-dose naltrexone (LDN) for MS. My MRIs remained relatively stable with no new enhancing lesions until the end of the ninth year. That’s when I started Tecfidera. It didn’t stop the lesions from developing, either. After a year, I went on Rituxan.

    After Rituxan, I was told by my new neurologist in a different state that I HAD to be on a DMD. Since my new insurance wasn’t going to approve Rituxan, I felt pressured into going on the injectable, Zinbryta. That medicine is junk, and really should be pulled from the market entirely instead of just having a “black box warning.” It resulted in surgery to remove stones from my common common bile duct and it caused suicidal ideations. It was also the reason I fired my neurologist. She insisted I stay on the medication.

    The last DMD I was on was Ocrevus. I had an anaphylactic reaction to the second half of the first dose. It was corrected by infusing at a much slower rate with a full IV bag of saline after I regained consciousness, and my blood pressure came back up. Six months later I did the full dose. Afterwards, more problems came up. Menstrual cycles that last for five months straight is not normal. Tests were done, and fibroids were found in my uterus. A hysterectomy was performed two weeks ago.

    So to answer the question at the top of this page, Why Aren’t You Using an MS Medication…my answer is: because the drugs are taking more away from my quality of life than they are helping. I am done with the additional side effects these drugs cause; I am done being told I “must” be on a medication for my disease; I am done feeling guilty for saying NO; I am done with the fear; I am done with feeling worse than the disease already makes me; and I am done with pharmaceutical companies hiding the accurate scope of adverse cases from patients and their physicians.

    Sherri

    • Ed Tobias says:

      Hi Sherri,

      Thanks for sharing all of that and I’m so sorry you’ve had all the trouble that you’ve described. I’m also very sorry that a doctor told you that you “had” to be on any kind of a medication. A treatment should be a shared decision between patient and doctor, with the final decision being the patient’s. A doctor takes an oath to “First, do no harm.” It seems as if you had a doctor who didn’t abide by those important four words.

      You’ve certainly answered the question of why you’re not using an MS medication. Thank you for your candor.

      Ed

    • Roslyn Corby says:

      Hallelujah! I couldn’t have said it better myself. Check out the NIH study from 2009 or so that disproves Copaxone’s efficacy completely–it was an aggregate study, Ed. Analyzed alll the studies… Surprised you missed it. NONE of the studies, double blind, proved this chemical does ANYTHING, so maybe the alleged scientist should check that out.

      Fact-based arguments win the day in most realms. But alas, not for we MS afflicted.

      Copaxone aggravated all of my symptoms. I was confined to a recliner for one year while on that drug. My neuro at UCLA fired ME because I refused to go back on it. She offered no other drug option, had a tantrum, left the office, left me with her nurse who she always preferred deal with patients anyway. I no longer see a neurologist, either. I’m done being treated badly by so-called specialists. I’m done being treated badly by ANYONE. Really glad to know there are more people like me out there who also question or reject entirely the use of these agents. I do, however, pay much more careful attention to my own body than any neurologist or physician ever has. Finis. There are better ways to live with this illness than to slavishly devote oneself to the hope that one of these chemicals will heal you. None will.

      Cheers to all thinking people who reject fear-based clinicians. We all deserve better than bad science and bully neurologists.

  14. Sarah says:

    Copaxone first- suicidal within 2 days.
    Rebif 8 months, reoccurring infections
    Tecfidera, palpitations
    Abuagio slowly paralysed my right leg, it wasn’t a relapse and improved after stopping, although had lasting bad effects.
    Enough said.

  15. Cp says:

    My onset of MS was likely 1978 @ age 15. I have a gene varient which backs this up and a former neuro who shared the opinion. I was diagnosed with MS 27 years later. There were more than 25 to 30 non active kesions in my brain at DX and 1 active CSpine lesion. I had 3 to 4 non active lesions plus atrophy in the TSpine.

    I was took Copaxone in a clinical trial, which I turned out to be allergic to. Between the Copaxone and the steriods, I devoloped anemia, fat deposits on my spinal cord and eosinophilia.

    That drug was supposed to have the least side effects. It is also the least efficacious MS DMT. It took over 2 years to recover from the damage after I stopped taking it.

    I never took another MS drug. I sincerely doubt the RRMS drugs at that time would have addressed my issues anyway. Brain atrophy and cognitive impairnent.

    HSCT and Lemtrada are supposedly the best at reducing brain atrophy rates so far. There have been trials with Ibudilast and Alpha Lipoic Acid which also both look promising.

    I have also been seeing new studies questioning the ability of MS DMTs to have much effect in people over 50. The same study found the best results from DMTs started as close to onset of MS as possible, using high efficacy DMTs before the early 40s.

    My main concern is doing all I can to stop or reduce the rate of brain atrophy while the MS nurse keeps trying to force the wrong type of drugs at me.

    For now, I’ll do it my way and target the brain atrophy, decline the crabs drugs, while I continue to research the best way to prevent more atrophy.

    • Ed Tobias says:

      CP,

      You’ve done a lot of good research.

      From what I’ve read, Tysabri, Ocrevus and Lemtrada do appear to work best when they’re started early in the course of MS. But, from what I KNOW from personal experience Lemtrada can stop symptom progression, and even reduce some symptoms, in people over 50 despite what these recent studies have reported. I began Lemtrada at age 68. I’m now 70. Both in test results and in my personal observations my MS progression has been halted and some symptoms have improved slightly.

      This is why I, personally, agree with those who encourage hitting MS hard and fast, rather than starting with less effective DMTS and progressing up: https://multiplesclerosisnewstoday.com/2019/01/29/new-study-dmt-hit-hard-fast/

  16. Matthew Klein says:

    It’s sheer, utter ignorance, fueled by a huge gap in the understanding of what each DMT precisely does, the inability to predict if MS will respond to that particular DMT and what side effects, if any, will the DMT produce. Many give up due to poor physician to patient communications, which I always blame on the physician.

    • Ed Tobias says:

      Matthew,

      I believe that poor communication between doctor and patient is definitely a problem that results in less-than-informed treatment decisions and, as a result, poor disease outcomes. Much of that falls on the shoulders of the physician but we, as patients, owe it to ourselves to be knowledgeable and proactive about our treatment…whatever it is. Be prepared for office visits. Know what you want to know. Be your own patient advocate.

      Ed

  17. JK Collins says:

    My only sibling, my brother, also has MS. I was diagnosed first and after my diagnosis, they tested him to see if that was what was causing his numbness in his hands. For YEARS he would say that he doesn’t NEED to take shots because his MS isn’t as BAD as mine. I started on Avonex then after 2 years moved to Betaseron, and after 14 years of that I moved to Copaxone and just a year ago changed to Ocrevus. Since diagnosis I have continued to work full time and as a single parent, put my only son through college. Needless to say, DMDs have done well for me to keep me functioning enough that I could accomplish working full time and putting my son through college. How has my brother done without them????? He’s now legally blind due to optic neuritis. And I’m still working, driving, and enjoying life. I’ve had to make certain adjustments, but at least I’m not blind!

  18. Glenda says:

    DMDs only prevent relapses. There’s no way to determine how many (if any) relapses one would have if not taking a DMD. One may have relapses while taking a DMD; there’s no guarantee. These horribly expensive drugs do nothing for already existing debilities or assisting with symptom management. Affording a drug is not the whole story; just knowing the price ($50,000.00+/year) is being added to your lifetime maximum is mind blowing. This is even more amazing when I recently read one drug company is making $3billion/year on its MS drug. This would only make sense if it CURED MS. I have to post my disclaimer now, at my neurologist insistence, I am taking a DMD now.

    • Ed Tobias says:

      Hi Glenda,

      Just to be clear, some of the recent DMDs (or DMTs) do more than just prevent relapses. While your statement may be true for some of the earlier medications, such as Avonex, Betaserone and Copaxone, the more recent meds have been shown to slow, or even halt, disease progression. This was evidenced in clinical trials and in actual, post-trial, use. This is particularly true of Ocrevus and Lemtrada. In fact, both of those meds are reversing some symptoms. I’m one of the people for whom that’s true.

      Ed

  19. Stupid Bitch says:

    I was diagnosed too late, 52 yo, prolly had MS over 20 years. I went straight on Tysabri 2 years ago but it’s just too late. Ive lost everything; Tysabri is only being sold to me to make a profit, it
    makes my life slightly worse. I don’t think I will go back for another infusion.

  20. Laura Jeffries says:

    I’ve had MS for 15 years. I tried the DMD in the beginning. The meds were way worse than the disease. I tried Rebif and Capaxone. Both were a living hell. I retired and took care of myself.
    I’m a R&D Chemist, so I’m not ignorant or stupid. I’ve spent the last 13 years treating my MS with low stress, vit D supp, as much sunshine as I can get, exercise and eating healthy-ish. Zero progression, zero flare ups.
    Now, had I been on any of the DMDs, they’d have claimed that as a victory for them. You CANNOT claim you prevented something that you can’t prove wasn’t going to happen!

  21. Marguerite says:

    Ed, beyond the best efforts of a doctor to educate and persuade, if a patient refuses to medicate due to what the doctor sees as “avoidance coping”, please tell me what you personally think should be meant by “strategies” and “pushing meds”?

    • Ed Tobias says:

      Hi Marguerite,

      I used the word “pushed” but a better word would have been “encouraged.” I don’t think a patient’s arm should be twisted in order to have that person accept use of a DMT but I do believe that encouragement, based on education, is proper.

      “Strategy” was not my word. It was part of a direct quote from the conclusions of study. I assume that it refers to patient education.

      The final decision must be that of the patient but that decision needs to be as informed as possible.

      Ed

  22. SarahC says:

    As a person with MS for the past 10 years and a scientist I am disturbed by how much insistence that a particular event is correlated with a DMT. In particular, there seems to be many people who had “worse” MS on a DMT than off it. Because MS is so highly variable in time and person it is impossible to draw that conclusion based on anecdotal evidence. And especially for people who have a relapse close in time to starting a DMT, that is not the DMT’s fault but it is true that DMTs take about 12 weeks or so to start becoming effective. Also there is no DMT out there that reduces relapses by 100%. So you likely may still have some decline and relapses, however you should have less than not being on a DMT. That is immensely important to realize. The reality is that most people with MS will do better with a DMT. Very few, very few, would be fine either way. But unfortunately many people wait until the build up of damage to their brain and spine is too much before being convinced to try a DMT. With all MS drugs one needs to balance the risks with their individual case. Someone with a very aggressive MS may opt for HSCT, Lemtrada (Alemtuzumab), Ocrevus or Tysabri. All have more risks but are much more effective. Someone with a mild or benign MS may opt for Copaxone (or interferons), which are less effective but very safe. So many people here are conflating causation with correlation. Anecdotal reports of symptoms worsening after treatments are unfortunately often highly influenced by our own interpretations which is why you need a double blind study where the patient doesn’t know, nor does the doctor, who is one which treatment. I know of a woman with MS who refuses all western treatments, who has claimed her MS to be “healed” but also has persistently declined and now can not walk, all the while thinking she is doing better than with meds. Truth is, she never tried medications, she almost certainly would have been better now physically if she had been on a DMT. But she has convinced herself she is well and healed despite all the objective indicators to the contrary of not being able to walk anymore etc. I’ve also had a good friend die of a very treatable cancer treatment for the same reason – the misguided belief that western medicine is evil. The reality is treating MS is hard, doing proper research to tease out effective treatments on a complex disease is hard, and DMTs don’t offer anyone a guarantee, so people then sometimes gravitate to a guru who claims to know how to heal them. For some with benign MS this is fine, for the rest of us, this is dangerous.

    • Roslyn Corby says:

      Its unfortunate you feel the need to conflate people seeking alternative treatments to MS as nut jobs. We’re not. We’re resisting these drugs which make life worse, not better, and try to find as many paths to a better quality of life as possible. Even the neuros want us to meditate and do yoga as little else helps us. Comprende?

  23. Wesdyne Otto says:

    I am currently not on a DMT for the first time in 14 years because I am unsure what one to use. I was on Copaxone for 5 years and after my MRI’s and body showed that it was no longer effective switched to the beta-interferon for 6 years. I found it very difficult to lose 3 days a week due to side effects but I persisted until the body ache were worse than the MS. I tried Aubagio (2017, 8 months) though it is counter-indicated in a small percentage of menopausal females – I was one. Now, I have no DMT. Appointment with Doc in March.
    I noticed that HRT has a positive effect on my MS, as long as the dosage is very low. I am eagerly awaiting the release of Mithra’s E4 Esterol based HRT that is showing positive effects with menopausal women. I am excited that finally, we are working with the body’s hormone system rather than modifying T-cell activity (or however the beta-interferons work).
    DMT’s do work, and I am always surprised when I meet someone who is choosing not to use the meds. I was diagnosed in 2004 and credit DMT’s with the fact that I only need a mobility aid (walking sticks for balance and energy saving) when walking the dogs or shopping. I acknowledge that the meds are like using a bazooka to kill a mouse, but I balance their negative effects with a healthy diet, exercise, personal coaching, and happiness. I am changing Dr.’s because I am in Canada and my Dr. had a problem with the fact that I use marijuana rather than meds to manage my spasms and anxiety. New Dr. is okay with my marijuana use.

    • Ed Tobias says:

      Thanks for all of your comments Wesdyne.

      It sounds to me that, through it all, you’ve been making the right choices. At least they’re the choices I’d probably have made in a similar situation.

      Best of luck,

      Ed

    • Roslyn Corby says:

      Hi Don,

      Try contacting the National Multiple Sclerosis Society. They have people you can call and speak with. They also have many videos that can be very helpful.

      nationalmssociety.com OR 1-800-344-4867

      Good luck. Keep reaching out.

      RC

  24. Job Saysno says:

    Of course I don’t use a DMT. They are all too dang expensive. The American health care system decided that MS patients don’t matter unless they have money. I was diagnosed at 20. I have had MS for 17 years. I work in health care. I see the reasons that health care plans deny meds (they should be sued). If you have a relapse on a med, even if it is working, health plans say no more. Apparently health insurance companies think treatment means cure. There is just too much to unpack here without seeming disjointed. I just know that American’s and the people they elect do not care about sick or disabled people at all. They want you to die. If you take help from the government, you are a thief stealing their hard earned tax dollars. If you want help from the pharmaceutical companies, you have to beg, you have to plead. That is awful for the mental health of a population that already disproportionately suffers from depression and successfully commits suicide (almost) more than any other cohort in America. Welcome to America. If you are poor (even if you work full time) and you get sick, the best thing you can do is kill yourself, at least that is the lesson learned from being denied access to health care for the past 17 years.

  25. TM says:

    I have been diagnosed with MS due to lesions on my MRI scans, bands in my spinal fluid, and an active lesion during my last MRI. I do not have any physical MS symptoms present. The initial lesions were found incidentally during a CT scan in ER. Could maybe recall having dizziness a lot in my 30’s, but that is about it. So I am hesitant to start taking something. I know I should be proactive for the future, but the side effects of the drugs scare me.

    • Ed Tobias says:

      Hi TM,

      You have a difficult decision. I’ve been using MS meds for years. It’s hard to say where my disease would be had I not been using them, but I suspect I’d be a lot worse than I am. On the other hand, I have a friend who was diagnosed about 15 years ago and who hasn’t used any DMTS…just steroids for exacerbations. Her disease doesn’t appear to have progressed but who knows what the future holds for her.

      You and your neuro need to weigh the benefits versus the risks but, of course, the final decision is yours.

      Ed

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