Treatment for multiple sclerosis (MS) may help slow disease progression and ward off future relapses. But knowing when to start medication and which one to choose can be confusing. Friends Samantha Payne Smith, 42, and Sheena Williamson, 44, discuss how they made decisions about treatment for relapsing-remitting MS.
Samantha Payne Smith: Sheena, since you’ve been diagnosed longer than me, I'm wondering what your introduction to medication was like. What did the doctor tell you as far as what drug to take and why?
Sheena Williamson: I was diagnosed almost a decade ago, so I don’t remember all the details. But I know they told me I needed to take medication to slow the progression of MS. They said drug treatment could minimize flare-ups of old symptoms and lower the odds I’d have a relapse from new lesions. And so I was like, OK, well I guess I’ll take it.
At the time, I didn't understand all the different disease-modifying drugs for MS or what they did. But my doctor did tell me about the JC virus and that I was a carrier. That means certain MS medications may raise my chances of forming a rare but deadly brain disease called progressive multifocal encephalopathy (PML).
So to lower my risk of PML, my doctor put me on the MS drug Tecfidera (dimethyl fumarate). He told me it might cause facial flushing, and my face did get red and warm when I took it. But that’s the only side effect I noticed for the 2 years I was on it.
Samantha Payne Smith: I know you stopped treatment at some point, and you haven’t been on an MS drug for several years. Why did you decide to do that?
Deciding to Stop Medication
Sheena Williamson: I’m just not a person who likes medication because I’m always leery of long-term health effects. And my doctor told me I’d probably had MS for 10 years by the time I was diagnosed, and I hadn’t had many issues up to that point. So in my mind, it just didn’t make much sense to me to keep taking medication for a condition that wasn’t that bad.
I also couldn’t feel it doing anything, though now I’m pretty sure it was doing something. But at the time, my doctor didn’t explain the benefits of MS medication very well. And I figured, why stay on a drug that might cause a deadly brain disease if it can’t cure my MS or completely stop the progression anyway? So I just quit taking it.
Samantha Payne Smith: How many years has it been since you stopped the medication? And how have you felt during that time?
Sheena Williamson: I stopped Tecfidera probably in 2016. Until recently, I hadn’t been on MS treatment for 7 years. Wow. That’s a long time now that I think about it. But I started a new medication in October of 2023 because I had two flare-ups within a few months earlier this year. And it’s not easy walking around with numb fingers and feet.
I talked to my neurologist about treatment options, and I decided to go with Ocrevus (ocrelizumab). That’s an infusion you get every 6 months.
How did you pick your MS drug treatment?
The Medication List: Confusion on the Right Choice
Samantha Payne Smith: I chose Kesimpta (ofatumumab) because it’s a shot, with a prefilled autoinjector pen, I give myself, which fits well with my lifestyle. It’s a similar medication to the one you’re taking, but I didn’t want to have to get an infusion. That would just be a whole ordeal for me, and I didn’t want that kind of big deal reminder of my disease.
But when I was diagnosed with MS, I didn’t start treatment right away.
My first neurologist wasn’t the nicest. He gave me a prescription for the same drug your doctor wanted you to start with. Then he told me to take it without really explaining why. And since I had no idea what the medication was or how it was supposed to work, I never filled the prescription. I got a second opinion instead.
When I saw another neurologist, she gave me a list of maybe three or four medications. I thought that was crazy. Because as many illnesses as I’ve had, and as many times as I’ve been to the doctor, never have I ever picked my own medication.
I left that second appointment feeling like my doctors didn’t have a lot of confidence in any of the MS drugs, so I took my time and did a lot of my own research before I picked one. And I didn’t start medication until a year after my diagnosis.
Sheena Williamson: What happened to change your mind?
Starting Multiple Sclerosis Medication: Quality of Life Matters
Samantha Payne Smith: I’d hoped healthy lifestyle changes would be enough to keep my MS symptoms at bay. But then one day I woke up and could barely move my neck. It was so painful to turn it left or right, especially after I looked straight ahead for a long time.
That’s when I went back to my current neurologist. He gave me steroids immediately, but also urged me to rethink long-term treatment. He explained that disease-modifying drugs don’t cure MS, but they can boost the chances my condition will stay stable for longer.
But when he told me drug treatment could improve my quality of life right now, that’s what made me decide to take another look at the medication list.
I joined MS support groups to see what other people thought about their medication, and I weighed the pros and cons of all my choices. I landed on the monthly Kesimpta shot because I’m not afraid of needles, and I like that I can give myself the treatment.
I’ve been on it for more than a year now and my range of motion is still pretty good, so I feel like I made the right choice for me.
Sheena Williamson. I’ve decided to take Ocrevus (ocrelizumab) for several reasons. One is that my neurologist has MS and that’s what he takes. He thinks it would be beneficial for me. But unlike you, Sam, I don’t want to be responsible for my treatment every month.
I’m not afraid of needles, but I’m not good at remembering to take medication regularly. Even when it comes to vitamins, I try to take them every day. But I’m so bad at it. They can be sitting right on the dresser and I’ll forget. So it’s better for me to have to go somewhere every 6 months or so to have someone else give me my treatment.
With that said, I’m still not completely comfortable being on long-term medication. But I have to do something because I want to keep the feeling in my fingers and feet. So I’m going to pray about it and do my part to slow down this disease.
Ask Questions About Multiple Sclerosis Treatment
Samantha Payne Smith: A lot of people probably leave their doctor’s office feeling like us: confused about whether medication is even worth it. But I had a wake-up call when I couldn’t move my neck enough to get my head off the pillow. That was scary for me, and I want to do whatever I can to keep the level of movement I have now.
So when my doctor suggested I start medication this go round, I said where do I sign up? And I plan to stay on drug treatment unless there’s some reason I should stop.
Sheena Williamson: When it comes to MS treatment, I encourage people to get second or third opinions. Do your own research and learn all you can, including about the JC virus and how your medical team will monitor your long-term risk for PML.
Hopefully, your doctor will explain things to you in a way that makes you feel empowered to make whatever choice is right for you. But if they don’t, always speak up and ask questions.
As far as how I’m doing on this new medication, it’s been a rocky start. My fatigue has lessened, but I still have numbness in my fingers and my balance is off. I also had double vision for a little while after my first infusion, but that’s gotten better since my second treatment.
I’m hopeful my MS symptoms will lessen with time. I don’t want to have another relapse, so I’m going to keep up with treatment. But I’m checking with my doctor often to make sure I’m doing the best thing for my health.
Show Sources
(Photo Credit: Image Source/Getty Images)
SOURCES:
Sheena Williamson, 44, social worker, Westchester, Ill.
Samantha Payne Smith, 42, MS advocate and owner of Samantha CurlHaus, Chicago.
