Let’s Treat Older MS Patients With More Respect

by Ed Tobias | April 23, 2021

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.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Leanne Broughton

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

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,

Beverly Kay Walker

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!

Ed Tobias

Hi Beverly,

That's horrible. Have you thought about getting a second opinion?

Leah

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

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.

Kathy Allen

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

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.

Yvonne Ashman

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...

Ed Tobias

You're spot-on, Yvonne.
Thanks for sharing those thoughts, and your passion.

Stephanie Billings

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.

Ed Tobias

Hi Stephanie,

Thanks for sharing all of the info about your long and winding MS road. It's interesting that the doctor at Mayo diagnosed Progressive Solitary Sclerosis. I've never heard of it but it seems identical to what neurologists are calling Clinically Isolated Syndrome (CIS).

Meanwhile, if you look at the McDonald Criteria for diagnosing MS you'll see why an official MS DX couldn't be made with just one lesion and why a DX of PSS/CIS could. I've put a link below. I hope it'll help your understanding.

https://www.nationalmssociety.org/About-the-Society/News/Updated-McDonald-Criteria-Expected-to-Speed-the-Di

Tina

Thank you for your article. I’m currently 60. I was diagnosed with RRMS at 45 with lesions in brain and spine. Retrospectively we were able to figure symptoms had started at least 3 years prior. I have been on Copaxone since age 45, and still am. It has worked well for me. If someone wanted to stop it now just because of my age that might jeopardize my health by risking relapse(s) and additional disability. I don’t know how the medical community can make those decisions if they aren’t researching older MS patients. How can they possibly know that it is currently helping me? That just doesn’t make any sense to me, and seems horribly reckless. What happened to first do no harm?

Ed Tobias

Hi Tina,

Thanks for your comments. As I've written, I think that the decision about treatments should be made by the patient with guidance from the medical provider. I just wish the research community would include seniors in more studies so that more information would be available to help us make these decisions.

Martha Griffith

My Doctor suggested over 10 years ago that I may have MS to check into it. Which I did not. Didn't know what it was. Now at 69 I have had a bad flare up, can not hardly walk. It feels like I am walking on burning glass up to my my knees. I have had the MS Hug, I have several brain lesions, one behind my ear, one on my lower leg, UTIs often, Swallowing problems, Chocking on water a lot, Feel like I am going blind The Itching with nothing there but a lesion, I have pains pinging all over my body. Let me know if anything helps. Most days are unbearable, I cry it hurts so much. My husband does not understand what is going on, or want to.

Ed Tobias

Hi Martha,

Sorry to have taken to long to have seen your comments. I'm very sorry for all of the problems you've had. There are many medications that may be able to slow your disease progression and to treat some of the symptoms that you describe. It's not to late to consult with a neurologist about what's been happening to you. Doing that might bring you some relief.

Mark

I feel for you I have MS Doctor found it by accident back in2016 I'm sure I had it for years I been taking tecfidira dont know if it helps. My pain is terrible usually can get get some relief with meds stay strong do your best f ck the rest

Tammy Belmonte

Hi Ed,
I was recently diagnosed with MS in April 2021. At that time the neurologist said to me, “You are much older than most people with MS. They are usually in their 20’s and 30’s.” I was shocked!
In December 2020, I was experiencing a bout of vertigo and my GP sent me to physical therapy. After the 4th maneuver I felt back to normal. Three weeks later I laid to go to bed, stretched a big stretch. Next thing I knew the room was spinning out of control, managed to hold onto the bed & walls to make it to the bathroom vomiting. After insisting there was more going on, an MRA revealed a brain aneurysm. This prompted an MRI scan where the “more than normal white matter” was discovered.
All I can say is BE Persistent and LISTEN to your body. Push for answers. One thing I am learning is this is not a cookie- cutter disease and it’s unique just like each of us! Fight for the right to be heard!

Ed Tobias

Hi Tammy,

Thanks for your comments. I was 32 when I was diagnosed. Though most people are between 20 and 40, more and more are being diagnosed later and earlier...some as early as elementary school age and some as late as in their 60s. Neuros who specialize in MS realize this but many general neuros don't. You're absolutely right, we all need to be our own healthcare advocates! Now that you've been diagnosed I hope you'll receive a treatment that works for you. (Treatments are as individual as the illness is for us.)

Good luck,

Carol Bodiford

My husband is 65 and started having gait problems about a year ago that has progressively worsened. He is seeing a neurologist who suggested he has to rule out MS. His symptoms appear to be classic MS but we don’t have a solid diagnosis. Doctor said he has to do another lumbar puncture because lab failed to do one of the tests that could possibly confirm MS. My husband complains of tingling and burning in legs, cannot lift his feet to walk and gets extremely fatigued. He hesitates in his speech and you think he has completed a thought and when you start to speak he shouts “you didn’t let me finish!” He gets very easily agitated and has violent outbursts. This process is taking so long and I am so discouraged by how long this process is taking. I don’t think the doctor understands this condition is not only affecting my husband’s quality of life but mine as well as I am often the recipient of his violent outbursts. Any suggestions on how to prod the doctor in moving faster to get a confirmed diagnosis so he can start a treatment program? He says he doesn’t want to start a therapeutic regimen until he has a solid idea of what is going on. In the meantime we are really suffering.

Ed Tobias

Hi Carol,

I think it's important for patients and those they live with need to be their own health care advocates. You and your husband need to be upfront with his about what's going on in your life. You might even want to consider finding another neuro, preferably one who specializes in MS, to examine your husband.

Here's something I wrote a few years ago that might help you communicate with that neuro.
http://multiplesclerosisnewstoday.com/2018/02/06/your-ms-doctor-full-partner-or-time-for-change/

Katy

I cried leaving my first appointment with an MS Specialist. I had seen four neurologists and had been diagnosed and treated, but I felt “seen” for the first time. I’m 21 years in and I feel like I’m aging into a new group of people with MS who were diagnosed as young adults and had mostly uninterrupted treatment all the while. I’ve had no change in my MRI in more than a decade, but it has never been suggested that I discontinue treatment.

Ed Tobias

Hi Katy,

Thanks for sharing your thoughts. I'm glad that you've found an MS specialist. I've been treated by a specialist for nearly all of my 40 years living with MS and I think it's made a significant difference in my treatment. I hope you have the same success. It sounds as if you will.

Sandi

I was diagnosed at age 29 in 1989 but didn't begin with a DMT until 2000 because I didn't understand what my cost would be at the pharmacy. I endured many relapses over a decade until one visit with my Neurologist changed everything. He had an MS Nurse working alongside him who gave me the information I needed to proceed with a DMT. Copaxone kept me free of relapses for 20 years until I was finally just tired of injections by the summer of 2020. I was 60 and asked to be switched to a new medication. My doctor never indicated that I was too old to be given another lifeline to keep me safe from disease activity. I have been on Aubagio now for 11 months and feeling grateful that the fear I had about switching my DMT never came to fruition.

Ed Tobias

Sandi,

Apologies for the delay approving your post and responding to it.

I'm glad that you found the right DMT for you. Twenty years is a long time to be sticking yourself. My first DMT back in 1996, was Avonex. I lasted for 12 years before finally giving in to my needle fatigue. I moved to Tysabri, Aubagio and Lemtrada and all were better for me in terms of efficacy and my lifestyle than the Avonex injection.

Jan

I was diagnosed when I was around 30. I am now almost 69 and on my 6th Neuro, with gaps in between. #4 told me that I was now SPMS, that if I had had a DMT from early on (as if) and that “relapses” were not happening since my diagnosis. Now I’m getting Ocrevus after some serious begging. I knew it wouldn’t be a cure-all, but I’ll try anything. I’m getting Dalfampridine now and have a collection of assistive devices.

Ed Tobias

Hi Jan,

Thanks for the info. I'm glad you're being treated with a high-efficacy treatment but you shouldn't have had to beg for it. It's really a shame that this is so often the case.

Hoping you do well,

Carolyn Walsh, MSN,RN

I read your piece with great interest since I am approaching 71, and have been treated with 3 DMT's over my 30 years with the disease; Avonex in 1996, when it first appeared. Then co-pays went from $30 for 3 months to $400 a month, which we couldn't afford. I went without Avonex or anything for 2 and a half years. I don't remember the year that Rebif rolled out but my neurologist found a much more affordable drug plan for me with that DMT and I was on that one for a little over 10 years. During the end of that course of therapy, my diagnosis changed from RRMS to SPMS. I also changed my neurologist and found myself down in the city at Penn with the head of the MS Neurology Department. He immediately switched me over to Ocrevus, after asking me if I wanted to be in a research study. Being a nurse and always interested in research studies, I assured him that I would love to be included but asked him the name of the study. He said, "Old People with MS". So, maybe we are getting noticed a little more often. It certainly will make ME feel a lot better! I began to wonder what they would medically "do with me and my DMT". I just didn't want to be "dropped". I was 60 and still practicing my nursing, could walk without a cane, and had all my marbles. Sure, I wasn't out there playing tennis but I was able to drive and ambulate and do just about anything I wanted to, except walk on a treadmill! I felt I was still a valuable member of society, and I was listening to this debate about what to do with old people with MS. It made me feel profoundly nervous and useless. So maybe this study, which Dr. Berger calls, "Old People with MS" is one of many going on to find out what we don't know what we don't know.
Thanks, as always, for your input.
Carolyn Walsh, MSN, RN

Ed Tobias

Hi Carolyn,

That's very interesting information. I wasn't aware of this study but now I'll have to check it out. Did you wind up applying for the old folks study?

Mary Rose Moran

Age 27 in 1980 DX with MS, very typical symptoms, eyesight, hearing, gait, tingling, numbness, vertigo, nausea, fatigue, half face numb. Now it is 2024 after working and retiring from a stressful caseworker (child protective services) in 2018 I am able to feel the symptoms that have never left, I am always with stress of inability, stress of medications, stress of MS. I have other conditions, weight, Diabetes type 2, spinal stenosis, and MS. To feel my best I swim as often as I can...lap after lap. I have lived my life in MS denial and might just be the actual Queen of denial. After not seeing a neurologist for many years I found myself changing Doctors, who ordered an MRI and referred me to a neurologist to become reestablished for treatment. I did. First one prescribed Achtar, I am a diabetic. Left him. Next neurologist was pretty cool, he prescribed Beta Seron to stop any progression although after looking at my MRI'S said I was stable. SO I decided refused the Beta Seron and continued on. I called in foot drop to his office MS navigator, he never gave Neurologist the report so no treatment for foot drop. Neurologist was pretty upset. No other treatment was from that flare. After that the office staff was pretty diligent if I called.
Then a big change came, pandemic, my newer neurologist retired and the Medical Plan physicians were down to some PAs.
I saw Dr. Nathanson in April of 2017, exam, saw my mir's informed my I had Senosis of the cervial neck area that was bad, told me at my age (63) and not taking meds, he does not do anything for me, therefore I would not need to see him for my yearly follow-ups. I was upset and told him I would feel better to check in yearly. So he said ok...but retired leaving no Neurologist to follow up. I could have pressed on, and maybe I did.
Currently I am age 70, have had MS for 44 years without much disability... although in denial for many years. I was raising kids, and family and just left it on back burner.
So here I ma age 70,at home, bo work, swim, stress all day...the flare up is distinct...I have foot drop in both feet=especially the big toes, I have fatigue, walking problems, unbalanced, use a cane, can only walk about 25 feet before I need to sit, cannot stand in a line, cannot walk fast, eyes are like I was during my attacks early on, hard to see at all from right eye, pain, numbness and tingling everyday, feet are hard to describe, numb, oversensitive, hard to bend, sight, hearing, voice, mobility.
Sorry way too long, needed to describe without minimizing...(I tend to do that) my concern and question is at age 70 I think I need a treatment plan? MS Meds? Therapy? A neurologist that will not be discriminatory to my age? What do I need? What exactly do I need and what should I look for to help my symptoms. Drop foot is driving me crazy for last 5 days...
Oh My thank you and thank you if you read and respond...
Thank you so, so, much. Mary Rose in Scranton, PA

Edith Denny

Mary Rose sounds like my journey with MS. I was diagnosed at 71 (after decades of misdiagnoses and intermittent symptoms) to be told by my neurologist that I was too old for drug treatment and so I use Gabapentin and PT sessions on and off. I am 75 now and my mobility is worse and have gone from RRMS to SPMS. Life does have daily challenges now. I have relocated to a different state so I will be seeing a different neurologist, and I think it is time for a second opinion on how if at all I can improve my quality of life. Thanks for all the stories here about challenges of aging with this disease. I also will voice a need for the older group to be included in studies instead of being brushed aside as too old to count.

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