MS news notes: DMT use in older people, spinal MRIs, and more
Columnist Ed Tobias comments on the week's top MS news
Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:
Are DMTs useful and safe for older MS patients?
The MS News Today story “Can elderly MS patients safely stop treatment? Study aims to find out” hits home with me. I’m elderly and have stopped my treatments. I think this story will also resonate with anyone else over 65 who has MS.
I’ve read many complaints online from older patients who had a hard time persuading their neurologists to continue treating them with a disease-modifying therapy (DMT), for various reasons.
This latest story notes that there’s evidence DMTs may not help MS patients older than about 65, but there hasn’t been a large-scale study of how effective and safe they are for people in that age group. Using Medicare data, these researchers plan to compare outcomes of patients who continued DMTs after 65 with those who stopped using them.
I started treatment with Lemtrada (alemtuzumab) when I was 68, stopping it after a standard two rounds. I think it was beneficial, even at that age. I hope this study will cast more light on how useful a DMT might be to someone of my “advanced” years, so that age won’t be an arbitrary barrier to treatment.
Pills are the most popular choice for the first DMT
An interesting study discussed in the story “Use of oral DMTs grew substantially since their launch: US study” looks at 20 years of patterns of DMT use.
I’ve been treated with all three DMT types — injections, pills, and infusions — and each had its own benefits for me. This study shows that oral medications have become by far the most preferred treatment option. Researchers think this choice may be due to convenience, cost, and safety.
I’m not surprised that lifestyle plays a large role in treatment decisions, as it should. What was your first DMT, and why did you choose it? After reading the story, please share your thoughts in the comments below.
Researchers recommend routine spinal cord MRIs to track lesions
After many years of ordering MRIs of my brain and spine to track my MS, my neurologist cut them back several years ago to brain scans only. She explained that spinal scans weren’t needed because spinal cord symptoms often appear before they can be seen on an MRI. Progression in the brain, however, was usually seen on a scan before symptoms were noticed.
The story “Spinal cord lesions tied to higher risk of clinical relapse in MS: Study” offers another perspective. It reports on researchers who think a close watch should be kept on the spine because patients whose MRIs show lesions on the spine have a higher risk of relapses than those whose MRIs show only brain lesions. They believe this distinction supports the routine use of spinal cord scans to monitor progression and help patients and doctors make treatment decisions.
While MRIs can be an uncomfortable experience for some and the test may not always spot symptoms before they occur, doing as much as possible to spot progression so that efforts can be made to stop it quickly makes sense to me.
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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Glenda Shine
Thank you for your coverage on these items. I’m almost 64 and diagnosed with PPMS. I fall into the too old to waste the money on the only treatment that finally came out for PPMS!
After waiting for something for 10 years, it was crushing to be told that.
I really happy to hear about all of this information. Thank you!
Ed Tobias
Hi Glenda,
Ah, you're just a youngster! I'm sorry you feel it's too late for more treatment but it's certainly your decision. When I decided to be treated with Lemtrada it was the intention of it being my final DMT and I probably would have stopped at 68 if it hadn't been available. But, I feel strongly that age, along, should not create a barrier to DMT use.
Thanks for being one of my readers,
Ed
Matthew Klein
It's important to understand that it is insurers and governmental (Medicare/aid, NHS, etc.) insurers that exert a massive control over medication approvals and hence, skews the statistics. To this piece, the jury is still out, but we know inflammation and with it, progression even in the absence of MRI activity is always occurring. It may be slower at an older age, but until we know it has stopped, treatment ought to be continued; certainly not begged for. There's a piece on more patients are on oral DMTs. Well guess what, insurers prevent them in many cases, from going directly to an infusion based DMT. Their lives are being thrown into the rubbish bin, prescribing low efficacy DMTs
Anita
Thank you for your column Ed. I was diagnosed with MS at age 55 and everything about is seems to have been atypical. It was a brutal onset and one significant relapse at age 63 sent me for an extended hospital stay (3 weeks at two different hospitals). Recovery came slowly, but it came and I was put on what I think has been a very successful DMT - I seem to be doing well with it and I am thankful for it. I have NO DESIRE to stop and risk the alternative relapse even at my old age of 65 now!
Ed Tobias
Wow, Anita. I'm so sorry to hear how difficult it's been for you but I'm glad you seem to have found a good DMT. No, age should not be an arbitrary determinant of whether or not someone can or should receive treatment.
Ed
Mary Kay
I am curious how the test came out for people of an older age who stopped taking there meds . I am 75 have had MS for 40 years with few relapses and none in many years I wonder what will happen if I stop my Avonex. I am so tired of the hassle but have a fear of the unknown
Ed Tobias
Me too, Mary Kay. I've been off DMTs for about 5 years, following Lemtrada. I think I've progressed very slowly, but I don't think I would have progressed any differently had I continued with a third round. Who knows? If the Avonex is holding the monster at bay, and you don't mind jabbing yourself each week, seems to me there's nothing wrong with keepin' on keepin' on.
Ed