MS news notes: DMT survey, keto diet, Gilenya generic

Columnist Ed Tobias comments on the week's top MS news

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by Ed Tobias |

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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:

Neurologists comment on DMTs available for RRMS

There are 20 disease-modifying therapies (DMTs) available to treat MS in the U.S. According to the MS News Today story “US neurologists satisfied with current RRMS therapies: Report,” a survey of 102 neurologists in the U.S. rates Kesimpta (ofatumumab), Ocrevus (ocrelizumab), and Briumvi (ublituximab-xiiy) among best DMTs to minimize relapses and disease progression in relapsing-remitting multiple sclerosis (RRMS).

All of these medications target B-cells that carry a CD20 receptor and are considered to be highly effective. Any new DMT entering the treatment pipeline would have to be “equally effective as these anti-CD20 therapies to be accepted and prescribed,” the story reports. The method of administration may also play a role in DMT choice.

In my many years of living with MS, I’ve been treated with a DMT injection, a pill, and infusions, all with varying levels of efficacy. I subscribe to the hit-it-fast, hit-it-hard philosophy of MS treatment, as long as that treatment is compatible with a patient’s lifestyle and risk acceptability. It sounds as if these neurologists are in line with that approach.

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Three MS therapies listed as WHO essential medicines

Keto diet and MS

My wife has followed a ketogenic diet to lose weight, and it’s worked well for her. The story “Benefits of ketogenic diet in RRMS may be long lasting: Study” reports how the keto diet could be useful to people with MS.

The keto diet is low in carbohydrates and high in fat. When followed for six months, the story says, it “significantly reduced measures of body fat and fatigue, eased disease symptoms, and improved exercise capacity, cognition, and arm and hand dexterity in people with relapsing-remitting multiple sclerosis.” But it can be hard to follow a keto diet for an extended period — just ask my wife. Only 58% of the people in this study did so after the study ended.

Have you tried a keto diet? How did it go? Please let us know in the comments below.

Gilenya generic reported to be safe and effective

When I’m prescribed a generic medication, I always have a nagging question: Is it as safe and effective as the brand-name drug?

Gilenya generic safe and effective, adherence good: Real-world study” reports on the experiences of 239 people who were prescribed a generic version of oral Gilenya (fingolimod) in Turkey. The results were positive, though the researchers cautioned that “long-term post-marketing real-life data are necessary to maintain confidence” in generic MS treatments.

This confidence in generics is important. My primary care physician has some concerns about the efficacy of generic medications. Although I use some generics, my nagging questions about them haven’t been erased by this study, although the results do seem positive for now.


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.

Comments

Marybeth avatar

Marybeth

Hi Ed, have you heard of anything about Tecfidera and cognitive impairment in long-term users? Well, it happened to me. And, my neuro said its been noted in long-term users. Just wondering, because after she said that I have not heard or seen anything regareding this horrible undiscussed side affect...

Reply
Ed Tobias avatar

Ed Tobias

Hi Marybeth,

No, I haven't heard anything about Tecfidera and cog impairment. On the contrary, the only study I can find reports some slowing of cognitive impairment over a short term.

Ed

Reply
CHAVATTE Adrien avatar

CHAVATTE Adrien

Unfortunately "hit-it-hard philosophy" is not followed by all... And I was offered to go higher range treatment only on time I get worse... Thanks to this strategy, I can't even walk properly today... I don't know how to populate it !

Reply
Ed Tobias avatar

Ed Tobias

Hi Adrien,

I'm sorry that starting treatment early with a high efficacy medication didn't work for you. Which DMT were you treated with and were you able to change to something else?

Ed

Reply
Darren Schuster avatar

Darren Schuster

Hi Ed
Great post, as always .....
I started The Best Bet Diet over 1 month ago. It is still early days but having RRMS on Ocrevus my fatigue levels have improved. They can only get better with continued food, exercise and supplements

Best regards
Darren

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Ed Tobias avatar

Ed Tobias

Hi Darren,

I agree that diet and exercise can certainly help. I haven't heard of the Best Bet Diet. What does it require you to do?

Ed

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Clare Magee avatar

Clare Magee

The diet really works I am living proof was 20 stone 2years ago am now 11half. I am confined to a wheelchair I got MS 20yrs ago now Secondry progressive. I lost 8 stone not being able to exercise. The Keto diet is now more of a life style for me.

Reply
Ed Tobias avatar

Ed Tobias

Hi Clare,

I'm glad the diet has helped you lose weight. Do you think it's also helped your MS in any way?

Ed

Reply
LD avatar

LD

yes I did the keto diet for one year and I did feel better cognitively and much less fatigue. I lost a lot of weight and my neuro was concerned how thin I had become. I also continued to exercise a lot. I have found continued exercise has done more for helping me fight the progressive nature of my MS better than anything. I now do a modified Paleo diet, have basically removed any added sugar from my diet. I am a compulsive label reader and I make a lot of our meals because of this. I was diagnosed with RRMS MS in 1980 at the age of 27. Being a research scientist in the field of neuroscience/pharmacology gave me a leg up in understanding my disease at a time when so little was understood and no treatments were available. I have been in a wheelchair full-time since 2005 but I never stop finding ways to move my legs with equipment. I am now considered a quad because all limbs are impacted. Interesting, my brain MS load has not changed in all the years of MRI monitoring but my spinal cord just keeps accumulating damage - lots of lesions throughout my cervical and thoracic regions. I'm a fighter and an eternal optimist.

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Ed Tobias avatar

Ed Tobias

Hi LD,

Thanks for all of the info. Interestingly, I was also DXed in 1980, but at age 32. Fortunately, I've only progressed to needing a scooter for all but very short distances. I think the various DMTs I've used have helped to slow my progression, which is almost entirely in my legs. But, who knows? I'm also an exerciser and think it helps as much as the meds.

I'm glad you're a fighter. I've always believed life isn't about hiding from the storm, it's about learning to dance in the rain.

Ed

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