DMT Choice for Your MS Is Your Decision

Ed Tobias avatar

by Ed Tobias |

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Gilenya, DMTs, disease-modifying therapies

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.

You’re invited to visit and follow 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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Agnes Weessies avatar

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.

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Ed Tobias avatar

Ed Tobias

Good points, Agnes.

I love your final sentence. Thanks for your comments.

Ed

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Debra L. Amann avatar

Debra L. Amann

Interesting patient-treatment information

-MS Patient since 1999

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Melissa Vemi avatar

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.

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Stacey Guenther avatar

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.

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Ed Tobias avatar

Ed Tobias

Good luck with your Ocrevus treatments Stacey. I've read some very encouraging patient reports about this treatment.

Ed

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Edward Parfitti avatar

Edward Parfitti

I'm on ocrevus I still feel like shit still the same ms problems in a rut with meds EGP

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Ed Tobias avatar

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

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