DMT Choice for Your MS Is Your Decision
About 15 disease-modifying therapies (DMTs) are available to treat MS these days. So, choosing which to use can be daunting.
I’ve been treated with four DMTs since I was first prescribed Avonex (interferon beta-1a) back in 1996. Each time I’ve switched treatments, my neurologist has suggested a number of DMTs she thought would be best for me. But she left the final decision in my hands.
So, I was interested to read a news release about DMT selection from Spherix Global Insights that hit my inbox last month. Spherix is a business intelligence and market research company. It regularly surveys neurologists and patients about the MS medications being used. In a review published in February, Spherix surveyed about 200 U.S. neurologists and audited over 1,000 MS patient records about how their first DMT was selected.
Neurologists guide the DMT decision
For all of the patients, neurologists had given them a choice of DMTs. But in 93 percent of cases, neurologists had recommended the DMT they thought was “best.” When that happened, 78 percent of the patients went along with that recommendation.
The top four recommended DMTs were Copaxone (glatiramer acetate injection), Tecfidera (dimethyl fumarate), Ocrevus (ocrelizumab), and Gilenya (fingolimod). Copaxone is an injection, Tecfidera and Gilenya are pills, and Ocrevus is given by infusion. The four differ in their efficacy and side effects. According to the Spherix survey, if an MS patient’s prognosis was favorable, the neurologist was likely to recommend Copaxone or Tecfidera. If the prognosis was unfavorable, Ocrevus and Gilenya were most likely to be recommended.
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Some patients disagree
Twenty-two percent of the patients didn’t end up going with the first DMT their neuro recommended. Why? Fifty-seven percent ran into an insurance denial. But the remaining 43 percent simply felt more comfortable using another med. Their reasons were almost evenly split between simply preferring a different DMT, being concerned about the brain disease PML, or having concerns about being able to tolerate the side effects of the recommended medication.
It’s your decision
In 1996, my decision to be treated with Avonex was simple. I was offered a chance to participate in a Phase 3 clinical trial, and I jumped at the chance to begin using one of the first DMTs to be developed. After several years of injections, however, I developed needle fatigue. So, I asked my neuro to switch me to another med.
I switched to Tysabri (natalizumab), but after several years, my JCV numbers rose to a concerning level. That led to another switch. Aubagio (teriflunomide) was my next DMT, but after starting Medicaid, cost became a factor. Now, I’m being treated with Lemtrada (alemtuzumab).
There are many reasons why one DMT may be more appropriate than another, and what was initially a good choice may not remain that way. When deciding about a DMT, I suggest that you educate yourself about all of the available medications, take your lifestyle and your finances into consideration, discuss several possibilities with your neurologist, and then make your choice. The important thing is that the choice should be yours, made with guidance from your neurologist, not the other way around.
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Comments
Agnes Weessies
Since my son's diagnosis, I've worked as a volunteer in a neurological inpatient rehab in a hospital. I've seen both new and some times returning MS patients. The ones that makes my heart ache for them are what my generation (I'm old) called the woo woo crowd. This is the group that was new age supposedly forward thinking. Diet can cure anything. Dont put anything in your body that is not natural. MS IS NOT NATURAL! Listen to your neurologist. They have the knowledge and education to understand what's happening with your body. It's not to say you have no input. Breathing oxygen has side effects. Think of the obsession with antioxidants. Yet we need oxygen to survive and live with the side effects. If its a choice that is not dictated by some insurance policy, discuss it with your neurologist. Dont base your well being on some YouTube posting.
Ed Tobias
Good points, Agnes.
I love your final sentence. Thanks for your comments.
Ed
Debra L. Amann
Interesting patient-treatment information
-MS Patient since 1999
Melissa Vemi
I was diagnosed in 1996 and my neurologist put me on Avonnex I was still flaring even with it. So she put me on Rebif and I had insurance issues. Plus I flaired on it. And she put me on copaxone. Next they put me on Mitazantrone. Next track selected tecfidera for me. Was on that probably 8 years. Then she has put me on ocrevus which I'm currently on and will be getting my second full dose on April 4th. My MRIs are showing no new activity how many number of years now. But I've been recently diagnosed with secondary progressive. I seem happy with that only because most people go from relapsing-remitting to secondary progressive within the first fifteen years and I'm into my 23rd year if you can't my first player in 1990 that lasted six weeks then went away for 6 years. After six years I was officially diagnosed with MS on February 14th 1996.
Stacey Guenther
When I was first diagnosed with MS, my neurologist wanted to put me on Aubagio. I didn’t even know there were other MS drugs. When the Aubagio wasn’t working, he wanted to put me on Ocrevus. I told him I wanted to be on Tecfidera, which is what my sister takes. So, I took Tecfidera for a while until he convinced me that for my type of MS - Primary Progressive MS - Ocrevus would be the one I pretty much need to be on. I was hesitant at first, and the reason I wanted Tecfidera is because my grandmother had breast cancer and there is a risk of breast cancer with Ocrevus. That scared me. But I’m watching myself deteriorate from the MS and I’m scared of that, too, so I’m taking a chance on Ocrevus. I don’t know what’s worse - cancer or MS. I go for my second half dose tomorrow, then my first full dose in six months. I had my first half dose two weeks ago.
Ed Tobias
Good luck with your Ocrevus treatments Stacey. I've read some very encouraging patient reports about this treatment.
Ed
Edward Parfitti
I'm on ocrevus I still feel like shit still the same ms problems in a rut with meds EGP
Ed Tobias
Hi Ed,
I'm sorry that Ocrevus isn't working for you. Not every DMT will work for everyone. I hope you can find something that will work for you.
Ed
Theresa Coe
Newly diagnosed aged 51 after living with ME (chronic fatigue syndrome) since I was 18. Unable to tolerate Tecfidera due to stomach pain so hoping to change meds soon, My dad had ME/CFA from 40 til my age then got Parkinsons, and his mum had MS from her 30s. Can´t help being curious if anyone else out there went from a lifetime of chronic fatigue syndrome to MS, Also tearful with frequent anxiety attacks, fuzzy head and several years battling depression. Oestrogen stays super low despite HRT (Lenzetto spray max dose) so unsure as to whether cognitive problems like loss of short term memory and awful moods due to menopause, MS or a combination. Am struggling to keep working but desperate to do so, both for financial reasons and as a distraction. Luckily I love my work and live in the EU where healthcare is free.
What is better tolerated on the tummy than Tecfidera? I want to be strong but I´m really scared at the moment.
Ed Tobias
Hi Theresa,
I'm sorry for all of your problems and your difficulties with Tecfidera are not unique to you. There are certainly many other DMTs available to treat MS and each has its own benefits, risks and side effects. It's certainly worth discussing a change with your healthcare provider. There's some great information about the various DMTs on this page on our website. It focuses on those approved in the US, and I don't know which are available to you in the EU, but it should help when you speak with your provider. https://multiplesclerosisnewstoday.com/treatments-that-modify-the-disease-course/
Ed
Renee Jones
Can you tell me more about Lemtrada and your experience with it. Is it a “once in a lifetime” DMT. I was diagnosed last year and my
Neuro told me to consider it. I’m currently on Ocrevus
Ed Tobias
Hi Renee,
Lemtrada was once in a lifetime for me, but I have heard of some people for whom Lemtrada didn't work well and who were switched to something else. There are also people who have had three, and some even four, courses of the DMT, rather than the standard two. I've written a lot of column about my experiences. He's a link to the latest one. You can also search for others.
https://multiplesclerosisnewstoday.com/columns/2021/11/27/my-5th-anniversary-with-lemtrada/
Ed