Care That's Personalized for You

Receiving a diagnosis of multiple sclerosis can be frightening. I know firsthand—I was diagnosed in 2013 shortly after I turned 29. I worried about my future and mourned for my past.
The disease comes in several forms with many manifestations. Much like our varied symptoms, people living with MS embark on different journeys. But while our individual experiences may be unique, there are similar underlying needs and conversations that must be had.
The Patient-Centered Outcomes Research Institute (PCORI) is working to learn more about individualized health care by way of six research studies on the four following topics:

Would You Rather
Recently, I began an aggressive disease-modifying therapy (DMT) after new active lesions popped up on an MRI. With the potential for daunting side effects ahead, escalating my treatment was scary and the process, taxing. But I know that all treatments mix risks and benefits. We ask ourselves, “What can I endure now to give myself a better quality of life later?” It’s a real-life game of “would you rather...”
With so much at stake, it’s important to understand whether using stronger treatments early after diagnosis will prevent or delay the worsening of symptoms, or whether we should wait to use aggressive treatment until after our MS has progressed. Two PCORI funded studies, one at the Cleveland Clinic Foundation and the other at Johns Hopkins University, are comparing these treatment strategies.
Results from these studies may mean that patients in the future won’t be in my situation, wondering what would have happened if I had started aggressive therapy sooner.
To Treat or Not to (Continue to) Treat
Most people with MS begin taking DMTs in the early stages of the disease, as research shows that’s when the treatments are most effective. But research has also shown that relapses and the appearance of new lesions decrease as we get older, and that DMTs are less effective at treating MS in its later phases.
So, could it be safe to stop taking DMTs later in life?
A project at the University of Colorado Denver asks whether patients age 55 and older who haven’t had a relapse or change in a brain scan for five years can stop taking DMTs without their MS worsening. It’s learning whether those who continue DMTs have a difference in quality of life and in symptom progression compared with those who stop.
I’ve chosen to discontinue DMTs for periods of time in the past, and while it was freeing to get a break from pills or injections, I couldn’t shake the fear that I had opened a door to more damage or disability.
But opposing questions arise, too: Is it worth the cost, risk, and toll on our bodies to continue DMTs as our MS progresses?
I’m not thrilled about the idea of taking a DMT forever, but I’m also not sure how I would respond if my doctor advised me to stop. Would I feel like I was giving up? Would I feel relieved? What if the disease started to progress again after a quiet period? Research into the safety and effectiveness of this option could help me decide.
Miles to Go Before We Sleep
Fatigue is my worst, most consistent symptom. It’s also the most common symptom experienced by people with MS. I have to decline invitations and miss out on social activities. I sometimes rely heavily on my husband to do the bulk of household chores. I struggle to help others understand what MS fatigue feels like.
There are no approved medicines to treat MS-related fatigue, but doctors often prescribe  amantadine, modafinil, and methylphenidate, which have been approved to treat other health problems. A Johns Hopkins University study is comparing each of these medicines to see which works best to treat MS-related fatigue.
But PCORI is not just about comparing pharmaceuticals. They are also supporting research comparing other approaches to fatigue, and this study looks at whether exercise programs delivered over the internet are as effective for increasing physical activity by people with MS as in-person programs.
Managing fatigue is a tricky endeavor, so having an evidence-based way to help us decide how to do so will be very helpful!
Somebody to Lean On
Depression is an often-overlooked symptom linked to the underlying disease process, and also can be a side effect of some DMTs. Financial struggles, feeling like a burden to family and caregivers, and uncertainty over future health and quality of life can make this struggle harder.
Evidence-backed physical and behavioral treatments for depression exist, but many MS patients either don’t know about them or don’t have access to them. A study at the University of Washington asks if a collaborative care approach can help control depression and chronic pain and improve overall quality of life. In the approach being tested, a nurse, supervised by physicians, psychiatrists, and psychologists, coordinates and provides treatment for depression as guided by individuals’ goals and preferences.
I’ve struggled with MS-related depression, and while I’ve never experienced collaborative care, I can imagine its benefits. There’s a stigma attached to depression that we need to work through. We shouldn’t feel shame for struggling.
But MS doesn’t have to be all negative. Life doesn’t end here.

Each of these studies raises questions that are often neglected or uncomfortable to consider. No matter what patients’ views are on these topics, my hope is they plant seeds for more assertive self-advocacy. I encourage people living with MS to speak to their specialists and share their thoughts and concerns.

Be heard.

To read more about PCORI research in MS, visit Momentum magazine.
Tags Healthcare, Research, Symptoms      4 Appreciate this
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Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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  • Regina   Mar 24, 2018 8:49 PM
    I am personally interested in the over 55 year old, coming off of the medication trial. But, I am also concerned about the reliability of the outcome. I think that this trial is scheduled to last two years. If the knowledge of what causes us to get to the secondary progressive phase is really not there yet, then how can you take a 55 year old and just take them off the drug for two years and have any accurate assessment if that will hurt them say in the next 5 to 10 years. Do these immune suppressing drugs help us to not go over into this next phase, and will removing them help to bring that on even though it may not show up for 5 to 10 years. Too much knowledge is lacking here for me for this approach. I hope that this is taken into account. Everybody wants to come off, but nobody wants to become progressive. Two years is not enough time for the trial in my opinion.
  • Rodney   Apr 19, 2018 2:27 PM
    I think there is more to the treatment section than above.... I had a very aggressive go of MS early on, but after progressively moving through treatments over first 4 yrs. I have had great success coupled with exercise.... example, I completed a 100 Century Ride in 4hrs 15minutes last summer... 8 years from my diagnosis, which had me in walker. There are several options/routes available and many people after years of loyal devotion to one therapy or another, ignore their ability to make a positive impact. I would recommend expanding the DMT information above, and explore progressive steps/side effects that patients can take. MS, as you noted, is not "end of life" in many cases, it's the perspective that some could use to make a positive change in their life. MS has presented challenges to my life, career, hobby's etc... I recognize it everyday, and everyone is different. Don't hold on to a therapy, if your life is impacted dramatically.... it's hard to break up.... but it's worth it.
  • Tammy p   Apr 19, 2018 5:40 PM
    How do I get approved for a study.
  • Miranda   Apr 20, 2018 8:01 AM
    I was diagnosed in end of 2005 with relapsing remitting MS. I started with Avonex and continued with that for about 8 to 9 years and then switched to Tecfidera for about two to three years. When I was approaching 60 my Doctor informed me that if my upcoming MRI was stable he no longer saw the need to stay on medication. The MRI was stable. I have been off MS med for 1 year 2 months with no relapses.
  • Mischa  Apr 25, 2018 6:29 AM
    I, personally, feel like starting treatment aggressively right after my diagnosis fourteen and a half years ago was the right move for me. Yes, the injections sucked (they're all that was available at that time), but they gave me at least some illusion of control in the first years, which was important.
    I also feel that it's crucial to be your best, well informed, medical advocate. If you want to change a treatment or even an amount of a dose, do your research first!!! Be prepared to explain why you'd do better on that dosage or that medication. If you have good, responsive, care partners, they should listen and seriously consider all care changes. Be forewarned, though. That doesn't mean you will get your way. They should explain their thinking when they do or don't accept accept your request.
    I'm curious about the over 55 research, but think I'd be very hesitant to stop my meds. Even though I haven't had any exacerbations in several years, I have had disease progression.