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 attention from researchers and from 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 to us older people with MS.
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 older people with MS?
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. Now, three years after Round 2, I believe Lemtrada was the most effective of the four. Lemtrada halted my progression and improved some of my symptoms. I was 68 when I began this treatment!
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 don’t know about treating older people with MS, and we’ll all benefit.
(A version of this post first appeared as my column on the MS News Today website.)
(Featured image by Steve Buissinne from Pixabay.)
