Who’s Willing to Accept More DMT Risk, You or Your Neuro?

Who’s Willing to Accept More DMT Risk, You or Your Neuro?
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As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision not made any easier if a patient’s neurologist is unwilling to accept much risk.

According to researchers at the University Medical Center Hamburg-Eppendorf in Germany, when it comes to one highly effective DMT, neurologists are willing to accept less risk than their patients are.

The DMT is Tysabri (natalizumab). One of its risks is progressive multifocal leukoencephalopathy (PML), a rare and potentially fatal brain disease. In the study, 69 patients treated with Tysabri and 66 neurologists were given a three-page leaflet about the association between Tysabri and PML. After reading it, they were asked whether they thought the Tysabri treatment should continue. Unsurprisingly to me, significantly more patients were willing to accept the risk than the neurologists. Forty-nine percent of the doctors reported that if told that Tysabri’s PML risk was two people in 10,000 or lower, they would stop treatment. But only 17 percent of the patients would.

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The researchers believe that one reason the patients’ risk acceptance was higher was that they had a significantly worse perception of the harm that MS could cause them. But the report also notes that both patients and doctors had higher-than-warranted expectations of Tysabri’s effects.

Tysabri was good to me. I was treated with it for about seven years, and it seemed to be more effective than my first DMT, Avonex (interferon beta-1a). I don’t remember any adverse side effects, and its monthly infusion schedule fit my lifestyle. However, when I was using Avonex, I quickly developed needle fatigue from the weekly injections.

Was I concerned about the possibility of PML? Sure. Fortunately, though, I was on the same page as my neurologist concerning benefits versus risks. She told me that I would be carefully monitored for PML. That meant blood tests and a brain MRI every six months. She assured me that if those tests spotted early signs of PML, I would have the Tysabri flushed from my system and be moved to another DMT.

My neuro told me that PML becomes more of a risk after two years of Tysabri treatments. It was at around that time that she cut back my infusions from monthly to every eight weeks. Increasing the time between infusions to as much as 8 1/2 weeks is not believed to diminish the efficacy of Tysabri, but it does reduce the PML risk.

After seven years on Tysabri, my blood tests showed that my titer score was rising to a concerning level. The titer score measures the level of the John Cunningham (JC) virus in the blood. The higher the titer level, the greater the risk that a dormant JC virus will reactivate and trigger a PML infection. It was at that point that I was taken off Tysabri and switched to Aubagio (teriflunomide).

A DMT decision needs collaboration

I hope that this column will help you and your neurologist avoid a knee-jerk reaction when deciding how to treat your MS, whether that treatment is with Tysabri or another DMT. The decision should be a collaboration — and both doctor and patient should have a good understanding of the risks and benefits of the treatments they are considering. Unfortunately, in my experience, that’s not always the case for either.

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.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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12 comments

  1. Norm St. Landau says:

    These comments seem spot on to me — particularly given the array of conditions and activities that, in my experience, make it difficult to assess MS activity.

    On TYSABRI for 2 years, I chose to move to GILENYA and now OCREVUS after my JC titer level hit the warning mark. I don’t believe I experienced different symptom activity with TYSABRI as opposed to other treatments. In contrast, my symptoms seem to very responsive to how carefully I manage my exercise, rest and sleep regimens on a day to day basis.

    Temperatures and heat exposure have been dominant triggers in my MS experience which I regulate by swimming several times weekly.

    To my mind, there is no doubt that carefully and intelligent selection of a DMT treatment in consort with a neurologist is important. But the mysticism and faith healing qualities of drugs are no substitute for the justice and virtue of thoughtful living.

  2. M. Yokum says:

    When I was diagnosed at age 70, neither the neurologist who diagnosed me nor any of the several I have been seen by since would recommend a DMT, stating my age fell outside guidelines for DMTs. I am still diagnosed as RRMS though I have not experienced any relapses since diagnosis. I have, however, experienced a steady worsening of all my symptoms (ON, balance, bladder/bowel, foot drop, impaired gait, etc.). I do not find it surprising that those of us with MS are willing to accept more risk of side effects from DMTs. Faced with the choices of slow and steady decline in functionality and the risk of a DMT, I would opt for the risk.

    • JR says:

      I never thought about being “aged out” of the DMT treatments, I suppose I can understand that from a statistical standpoint but I think I would be very unhappy.

    • Peggy says:

      I was happy to read you letter. I am a 72 year old female diagnosed in August shortly before turning 71. My neurologist would not give me a label so when people ask what typr I have I cannot say. I started in Sept on Tecfidera which is costly and my only side effect has been mild occasional flushing. I have not know of any other patient diagnosed so late in life, so I do not know what to expect. I am having PT, OT and cognitive therapy at a Rehab center for MS patients only.

      I will see my neurologist after the new year for my second only meeting with him. He is at an MS Clinic in a Major teaching hospital so I feel when I have the full battery of repeat MRIs in the morning and meet with him after lunch I may get answers to my questions regarding progression or relapsing etc

      I have read that there are new trials regarding possibility of remylinating drugs. That to me would be worth taking risks as my neuopathy in my dominant hand is the first sign I had in April and it is pretty painful. Neuopathy started in the toes soon after we began testing in May and has progressed up both legs and up the stomach. I seem some improvement with bladder bowel issues and I believe my walking improved after 12 days on a transatlantic cruise where I bought and took my first walker rollator. Lots of walking on some rocky seas was good exercise while I was missing PT for two weeks. I would love to hear more from others who have had diagnosis after the age of 70.

  3. One thing that both physcians and patients have to accept is that no one, and I mean no one, is getting out of this life alive-meaning we are all going to die, some of us sooner than others.

    With that said, the next item that patients and doctors need to get is that the MS WILL kill the patient, even with DMTs, MS kills.

    Third and finally, it is the patients’ right and choice if they want to pursue a more aggressive treatment/DMT —NOT the doc’s.

    The doc should advise, BUT IT IS NOT THEIR DECISION/CHOICE.

    It is my body, my life and my death, so it is MY choice.

    • Ed Tobias says:

      Hi Rhonda,

      I’m with you on everything except your statement that “MS will kill the patient….” I think that’s a little broad. I could die from a heart attack, or lung cancer or another illness totally unrelated to my MS. My MS treatment is definitely my choice but, unfortunately, not my death.

      Ed

    • Lorri Redmon says:

      I completely agree. I made the choice 18ys ago to never use a DMT again! Personally, I am unwilling to risk any of the side effects. Why do Dr’s shame a person for making that choice?! I fear the drugs more than the disease. I have progressed to SPMS. It is what it is, and I don’t regret my choices EVER!

  4. JR says:

    I liked the article — I’ve been on Tysabri for 8 years now, and my JCV tests still look good.
    No new lesions, and no real relapses (my body’s reaction to a UTI doesn’t count in my opinion).
    But my doctor and I have discussed this, and we both agree that even if the JCV test gets high, we’ll probably stick with Tysabri until I see a problem.
    That’s my MS-specialist doctor and a major university.
    BUT: since we haven’t hit that point yet, who is to say what our reaction(s) would be if we actually had to make that decision?

  5. Maureen Flaherty says:

    Please find a drug that will reverse the neurological damage that MS has caused.
    We as a community have waited long enough! Many of the drugs today cause more harm than good not to mention the price tag.
    I have to try moving forward for my family, but sometimes it can really get very dark.

    Th

    • Matthew Zimmerman says:

      Hello that is most definitely on the table in the very near future trust me. Mutiple therapies are being studied and in clinical stages as we speak. Our bodies naturally produce oligodendrocytes. However we dont produce them fast enough to keep up with active disease. The new medicines will combat that hopefully. Happy holidays stay strong never give up never give in.

  6. Matthew Zimmerman says:

    We as MS patients must decide at what level of treatment we’re willing to accept. I chose Lemtrada 3 and half years ago. The risk was well worth it for me in my opinion. I was headed towards a wheelchair. Now I’m walking unassisted for years. I can withstand the heat,maintain a erection, edss score has improved about 80%, vision is 20/25 thank g-d. I can walk up and downstairs and the list goes on touch wood it continues to go this way. One negative is I have hypothyroidism. I take a pill the size of a tic tac now my TSH levels are perfect. Probably more so than before I infused the medication. So for me this was my decision and why I chose the medication. I trust my MS specialist implicitly. Happy holiday’s

  7. Caroline says:

    I was diagnosed in 2001, my age 53. At that time I was never told what type of MS, it definitely wasn’t RRMS, it would be SPMS. Every DMT I took, which were DMT for RRMS made me really sick; but Tysabri did the most damage. From 2001 to 2009 all I used was a cane and could still do everything except work. MY MRI’s were looking good, no new lesions, was/am back taking Naltrexone; but for some reason my doctor thought it would be a good idea to go on Tysabri and like the others it is a RRMS DMT. Thinking like my mother would have, the doctor is always right and I didn’t question it. I did some research; but not enough. Started the once a month transfusions in 11-2009, by April 2010 I needed to use a walker, by the end of June 2010 I had to stop driving. I lost a lot of my independence and the ability to do a lot of the things I love. I questioned the effect of an RRMS drug on someone who did not have RR, no answer. Blood work said I did not have PML; but by that last transfusion (9th), I felt like I was dying, I could just about move my arms and legs. My Dr. said the company never had anyone with this kind of reaction, I thought, no, they just had people die. Like a previous comment, it is your body, research, research before you agree. As we know MS does not affect everyone the same way, and neither do the drugs. It is hard for me to make the decision to go on a new drug, not knowing what it may do, for me it is real risky. I now live with my daughter and her family.

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