MS news notes: Foralumab, Ocrevus, Kesimpta, exercise
Columnist Ed Tobias comments on the week's top MS news
Welcome to “MS News Notes,” a Monday morning 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:
Foralumab shows early positive results for SPMS
I’ll say up front that this is a very small study. Just six people with nonactive secondary progressive multiple sclerosis (SPMS) have been participating for less than a year. But the Multiple Sclerosis News Today story “Microglial activation reduced in 5 of 6 SPMS patients on nasal foralumab” is interesting to me for three reasons.
Firstly, foralumab is being tested on people with SPMS. Currently, no treatments have been approved by the U.S. Food and Drug Administration for this form of MS. Secondly, all six test subjects saw their disability progress while being treated with Ocrevus (ocrelizumab). But data from two of the six people show a reduction in disability after being treated with foralumab. Thirdly, foralumab is a nasal spray, which would seem to be a lot easier for someone to tolerate than either an injection or an infusion.
Ocrevus may work better than certain oral treatments
The MS News Today story “Ocrevus best to prevent MS relapses after stopping Tysabri: Study” reports exactly what the headline says. The study discussed in this story compared Ocrevus with two oral therapies, Gilenya (fingolimod) and Tecfidera (dimethyl fumarate) for people with relapsing-remitting multiple sclerosis who transition from Tysabri (natalizumab).
I was treated with Tysabri for about seven years and then moved to Aubagio (teriflunomide), which is a pill. It was effective, but in my view, not nearly as effective as either Tysabri or Lemtrada (alemtuzumab), which became my last disease-modifying therapy (DMT). It would be interesting to see Ocrevus in a head-to-head study with Lemtrada following Tysabri treatment.
Kesimpta also beat pills
Another study looking at DMTs was discussed in the story “Researchers analyze switching to Kesimpta from oral therapies.” This one compared Kesimpta (ofatumumab), delivered via injection, with the oral therapies Gilenya (fingolimod), Tecfidera (dimethyl fumarate), Vumerity (diroximel fumarate), and Bafiertam (monomethyl fumarate).
After switching to Kesimpta, patients experienced significantly fewer relapses and had less lesions. Again, based on my experience, I’m not surprised.
Combine cardio and aerobic exercise to help your MS
If you read my columns regularly, you’ll know that I’m a big fan of exercise. I think it helps my mind and body. It’s always nice to have my personal experiences confirmed by a study, such as the one discussed in “Aerobic, resistance exercises most effective for patient fitness: Study.”
The study recommends the kind of exercises I’m doing — resistance work on my upper body — but also recommends aerobic exercise, such as jogging or cycling. That’s something I’ve always found tough or impossible to do, and I think many people with MS are in the same boat. At one time, I could do 20 minutes on a recumbent bicycle, but now I’m lucky to manage three.
Does anyone have ideas about an aerobic exercise that doesn’t require much leg work? If so, please share in the comments below.
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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Cody Green
I’ve been e-biking for 2 years now. I used to bike often but had to give it up. The e-bike has been life changing for me! Really helps when those legs get tired!
Ed Tobias
Hi Cody,
My wife wants to get an electric trike for her to use. I've thought about one but they seem pretty expensive.
Ed
Greg Bond
I am fortunate to still be able to ride my bike for 15-20 miles despite having SPMS. I also lift weights a few times a week. I find rowing to be the best overall exercise as it engages the whole body, doesn’t require good balance and you don’t have to use as much leg strength as biking or walking. I do that in winter or bad weather or don’t feel up to the bike.
Ed Tobias
Good for you, Greg. Keep it up.
I've tried a rower in the gym but I haven't yet found one that I can get on and off without a lot of work. So, I stick to chest, shoulder and arm machines and I may now look into a hand bike, as someone else suggested here.
Ed
John
Get a hand bike - they’re as cheap as $35 and as expensive as $150 depending on the bells and whistles you want (they’re are many on Amazon for example) - but as an ex-runner it’s the only thing I’ve used consistently to get my cardio in and heart rate up every time I use it. And some of them can also be put on the floor so someone “more able” can pedal it with their feet as well. Worth the purchase - as long as you have at least one good hand and arm.
Ed Tobias
Two good hands and arms, John, so I'm in on this. I never thought of a hand bike and I'll definitely look into it. Maybe I'll suggest it to my wife as a Fathers Day present.
Thanks,
Ed
Cyndel Route
I do a couple seated workouts on YouTube. The "Wheelchair Core" workout on Adapt to Perform and the "Seated Aerobics Exercise Class" on Learning Labs, are a couple favorites. Also, Ashely Freeman has two seated aerobics workouts, as well as seated yoga classes, on her channel. Some of these classes are more challenging than others, so I can choose according to how much energy I have on that day.
Ed Tobias
Thanks for the tips, Cyndel. I'll check them out.
Ed
Chris C
I do not have MS and this suggestion may not work for you due to the difficulty of getting on and off of the bike. But I have ridden a Schwinn Air Dyne for around 35 years on a daily basis. If you can manage to get on and off (Perhaps with a stool or some applicance), there are stationary pegs at the front of the bike that you can put your feet on and arm handle devices to use to power the bike. I am on my third Airdyne and have put literally 10s of thousands of miles on each of them with little to no maintenance. If you get either the 1st or 2nd generation bike (big fan and little fan) they are built to last much longer than the newest ones that have been created once Schwinn was bought out. Anyhow, just an idea. I have a niece in her 40s that has dealt with MS for around 10 years. I admire you for your efforts and hope that you can find something aerobic that works for you. God Bless.
Chris C
One more clarification, a Schwinn AIrdyne is a stationary exercise bike. (Sorry for any confusion).
Ed Tobias
Hi Chris,
Thanks very much for the suggestion. I'll take a look at one on-line and see if it looks like something I could use.
Ed
Fiona Marshall
I use the online MS-Gym which provides daily exercises geared to MS. There are regular HIIT sessions which are chair based, such as boxing and running. Both raise the heart rate so I guess if you wanted to increase your aerobic exercise then you could do this most days? Personally this programme has been a game changer, making me fitter, improved my eyes, balance and general resilience. It gives me hope and a sense of control over what is a crappy condition. Best of luck Ed. https://www.themsgym.com/
Ed Tobias
Thanks for this, Fiona. I've heard several others rave about the MS Gym since it began operating several years ago. I keep meaning to take the time to try some of the sessions but never have. Your note may push me to do it.
Ed
Hema
Hello,
my self Hema 32 years old and recently i have been diagnosis with MS. I am scared that after some time i be not able to do anything by myself also the treatment of MS is too expensive for me.
I am in stage of RRMS the attack was come in May 2023 and now i am fine but some times in my leg and hands i feel numbness can you please tell me the numbness is normal .
i was taking AVONEX Injection weekly from JUNE 2023
Ed Tobias
Hello Hema,
Thank you for writing.
I was also 32 when I was diagnosed. That was in 1980...nearly 43 years ago! Over that time my MS has slowly progressed and today I walk very short distances using two canes and use an electric scooter for anything more than about 150 steps. But, I worked full-time until I was 64 years old and have traveled to many countries. I have been married 47 years and we have two grandchildren. You can live a good life after MS.
Numbness is an MS symptom and it may come and go. There are medications that can reduce the frequencies of your MS attacks and some that can slow the progression of your illness. My first medication was Avonex, but it is now a very old treatment and is not as effective as many of the newer treatments. I would ask your neurologist about other treatments. I don't know where you live, however, so I don't know which of them may be available where you are. I also don't know what to suggest to you about paying for the medications because I don't know where in the world you live. In some places the drug companies may help with paying for their medications.
I hope this has been useful to you.
Ed
Charlyn
Hi I was on a few of the medications discussed and now on Kisempta. Surprisingly this med works good for me.
I was reading your discussion on exercise. Before MS I ran, walked, played tennis, loved bike riding and swam. Now, I can’t do anything and gained tons of weight. Recently I started using kettle bells and doing sit to stands. I feel so less than a person not being able to do much. Tried the gym but when I work too much my right side shuts down. Such a drag
Ed Tobias
Ho Charlyn,
I'm glad that Kisempta is working well for you and that you're doing what you can to exercise. Have you investigated any of the several MS exercise programs that you can find on YouTube and on the Multiple Sclerosis Association of America's website? They may be better suited to your needs.
Ed