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Let’s Treat Older MS Patients With More Respect

Let’s Treat Older MS Patients With More Respect
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As comic Rodney Dangerfield might have said, older people with MS “just don’t get no respect.” By older, I mean those of us who are 55 and up. By respect, I mean from researchers and some neurologists.

So, as I approach my 73rd birthday, I have to tip my cap to doctors Eva Strijbis, Anne Kerbrat, and John Corboy for some respect they’re showing us.

The three doctors have just published “Discontinuation of Disease-Modifying Therapy in Multiple Sclerosis: Should We Stay or Should We Go?” in the journal JAMA Neurology. They address a question I’ve written about before: How old is too old to be treated with a disease-modifying therapy (DMT), particularly one that’s aggressive?

To treat or not to treat?

I’ve been treated with four DMTs in my four decades of living with MS. The first was Avonex (interferon beta 1a) in 1996. Then came Tysabri (natalizumab) and Aubagio (teriflunomide). The most recent was Lemtrada (alemtuzumab) in late 2016. I believe Lemtrada was the most effective of the four, and I was 68 when this treatment began. Lemtrada halted my progression and improved some of my symptoms.

But some neurologists won’t prescribe a DMT for someone older than 50 or 60. There is some indication that the older you get, the less your MS will progress, so those doctors think you don’t need treatment. There’s also a concern that older people may poorly tolerate a DMT’s side effects.

The doctors writing in the JAMA Neurology article mentioned earlier, however, believe certain DMTs can be beneficial to older people with MS.

“For patients diagnosed as having MS at an older age and with active focal inflammation (in terms of new/enhancing MRI lesions and relapses) at older age therapy likely does have beneficial effects,” they wrote.

The authors also expressed concern that withdrawing a DMT runs the risk of the disease activity rebounding.

We don’t know what we don’t know

There’s a lack of solid information about this. Many, if not most, clinical studies of MS treatments exclude older people.  So, data about safety and efficacy in MS seniors is hard to find.

“Yet efficacy in older patients is often unknown or appears markedly limited. While patients 55 years and older account for almost half of adults with MS, they have been systematically excluded from nearly all the pivotal phase 3 trials,” the authors wrote.

So, to paraphrase former U.S. Defense Secretary Donald Rumsfeld, we don’t know what we don’t know.

What should we do?

Doctors Strijbis, Kerbrat, and Corboy suggest several things, such as including older patients in controlled, randomized studies of a wide spectrum of DMTs; analyzing efficacy and safety in a variety of age groups so that risk versus benefits and cost-effectiveness assessments will better reflect the real world; and perhaps most importantly, “focus more on individualized treatment strategies, especially on how to better predict which patients need therapy and which patients do not, at both the beginning of the disease and in older patients who have been treated for a long time.”

Maybe if this is done, researchers and clinicians will finally know what they haven’t known about treating older people with MS, and we’ll all benefit.

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, 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. Leanne Broughton says:

    That’s me. I am 61 yrs and I don’t want to stop fighting. My neuro did not want to continue my Ocrevus every 6 months but space it longer. He cncededed and I carried on, 2 more doses. I stopped it when my walking suddenly became worse about 2 weeks after each dose. MRI shpwed no new activiy. Then Covid hit. Lucky i’m not on anything when I get my vaccine. Will try another DMT when I’m vaccinated?

    • Ed Tobias says:

      Hi Leanne,

      Not being a medical professional I wouldn’t venture a guess about what happened two weeks post-treatment that made things worse. I hope you do try another treatment. (There are certainly a lot of them now.)

      That COVID vaccine is important. As you indicate, it seems as if you’ll get a higher efficacy if you’re not being treated with certain DMTs, particularly Ocrevus.

      Good luck to you,

      Ed

  2. Beverly Kay Walker says:

    I was diagnosed with MS at 73. The research doctor I was referred to at UT SW Medical School in Dallas said I was too old for any treatment when I asked what I could take or do. I am now almost 77 and getting worse all the time, especially with walking and bladder issues. How I wish I could get some help!

  3. Leah says:

    I’m 63, have had MS for 37 years, and have never had a doctor suggest not taking a medication. I’m kind of shocked that neurologists would do that.

    • Ed Tobias says:

      Hi Leah,

      That’s great and you’re fortunate. You’d be surprised at the number of neurologists who are putting an age-cap on some MS treatments. It seems to be based concerns that, as I wrote, efficacy is reduced and problems increase in older people. Even if that’s the case, the risks and benefits of all treatments should be provided to patients to allow them to make a well-informed decision of how they’ll be treated.

      Ed

  4. Kathy Allen says:

    Hear, hear! Important focus. I am 67 & was diagnosed with MS when I was 20! Apart from one year on Avonex & one year on Interferon, I have been on no DMT! Today, I will start on Fampyra which is not a DMT.

    • Ed Tobias says:

      Thanks your comments, Kathy.

      No, Fampyra isn’t a DMT. Though it only treats symptoms it can be very useful to some to improve their walking speed and balance. I used Ampyra, the brand-name version, and it helped me.

      Good luck to you. Please let us know how it goes.

      Ed

  5. Yvonne Ashman says:

    Diagnosed with MS at 54, treated for 5 years with Rebif 44 with cumulative, unpleasant side effects that eventually saw me bed ridden. Told it was my MS, I decided one morning to go ‘cold turkey’ and stopped using the therapy immediately. Three days later I was fine, up and about and feeling 100% better…so, not the MS. After several years and some lesion activity, I decided to try Cladribine (Mavenclad)and volunteered for the research program being conducted by the hospital and the manufacturer of the drug…I was 61 at the time.

    But yes, attitudes can be bothersome. General GPs are the worst, and some, if not most of my neurologists. I have to fight for every second of their time, and the indifference and utter contempt shown can be breathtaking at times. Stand your ground. Get angry. Make them see the human being behind the slowly crumbling facade (though mines holding up pretty well)and show them age, in itself, is not a death sentence, and shouldn’t be. Stay involved in your treatment and get pro-active. Keep abreast of new research and fight for your right to be included in it. We still have value.

    And, above all, maintain your dignity, if nothing else…because, sometimes, that’s all we have…

  6. Stephanie Billings says:

    I was also diagnosed later in life, currently am 61, diagnosed at 58 however had symptoms since late 40s. Initially went to Johns Hopkins(JH), (while living in N.Virginia) and was told with only one lesion did not have MS. Regardless, saw more Neurologists and was diagnosed in May 2018 and was put on Ocrevus. However, had some concerns with reactions and went back to JH and saw another good MS doctor and he said no MS, but recommended at my age to stop Ocrevus. Since I had numerous neurologists (4) tell me I didn’t have MS and one that did, finally went to Mayo Clinic (MN) and got a true diagnoses. With one lesion at C1 and all the symptoms of MS the doctor diagnosed Progressive Solitary Sclerosis, and gave me the choice to stop or continue Ocrevus. Now in Boise, Idaho and my neurologist is also giving me a choice. But I agree with the article, we should be allowed to choose and be included in all drug trials.

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