How a Clinical Trial ‘Fail’ Was Still a Win for Me — and for the MS Community

The trial medication didn’t do what researchers hoped, but I still found new confidence, community, and knowledge that I helped advance MS research.

My last multiple sclerosis (MS) relapse left me more disabled than ever before. I was walking with a cane again — and I still had little kids, who were oh-so-fast, and I wanted to keep showing up for them.

I knew that my disease-modifying therapy (DMT), like all the others on the market, could slow the progression of my MS, but so far, none of them could repair the damage already done by the disease.

However, I’d heard that participating in a clinical trial was a way to gain access to — and possibly benefit from — promising new therapies that were being investigated.

So, I began to talk with my neurologist about my interest in participating in a study and she kept me informed about upcoming trials at the research university where she worked. Then one day she mentioned that she would be leading one arm of a new drug trial.

I asked for more information and received a printout with an overview of the trial, which included the drug name (Elezanumab) and its code name (ABT-555). The researchers hoped the drug would restore the myelin sheath that gets damaged in MS flares.

I talked with my husband about possibly participating in the trial and discussed the risks of the drug, which included headache, back pain, nausea, rash, and upper respiratory infection. There was also the possibility that it wouldn’t work — or that I wouldn’t even receive the medication, but might get a placebo instead.

We agreed that the potential benefits outweighed the risks.

Shortly after that, while I was receiving my DMT infusion, I overheard a nurse signing up another patient for that clinical trial. I quickly raised my hand to say I was also interested. I signed some paperwork right there on the spot, and that got the ball rolling.

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The clinical trial process

The study was a phase 2 trial, which usually involves a few dozen to a few hundred people, and aims to determine whether a treatment is effective.

For the trial, I received infusions of the study drug once a month. Each infusion took about 2 hours, and there was a 2-hour observation period afterward. I also continued to take my usual DMT during the trial.

I was nervous about starting the trial, of course. I worried there might be risks the researchers didn’t even know about yet, since the phase 1 trial group only received five infusions, and I would be receiving 12. It felt like uncharted territory.

Still, the possibility that a new medication might help heal or reverse some of the damage I had sustained from my recent relapse gave me courage.

I received my infusions in a private room and took advantage of this: Each time, I lay back in my infusion chair, meditated, and then had a little nap. Plus, they provided healthy snacks. That’s pretty much a mom’s ideal day out!

As if that weren’t enough, I also received compensation for my time, and the trial covered the cost of transportation. 

I checked in with the trial coordinators after every infusion and saw the study neurologist four times during the trial. The clinical trial staff was courteous and answered all my questions about the procedures involved in the trial.

During the trial, which lasted about a year, I had four MRIs, six ECG tests, lab tests, cognitive tests, and innumerable questions about my medical history, my medications, and my mental and physical well-being.

In addition, I wore motion monitors on my chest, upper leg, and calf on three separate occasions for a week. The trial neurologist said they used all this data, along with the Expanded Disability Scale Score (EDSS) and other measures, to determine if we had any improvement in our functional abilities. 

The trial was randomized, double-blinded, and placebo-controlled. This means that a computer randomly assigned the patients to one of three groups: those getting the study medication in a small dose, those getting the study medication in a large dose, and those getting a saline solution placebo.

Our infusion bags were simply marked with the patient number that the computer assigned us, but no one — not the patients, the doctors, the nurses, or the clinical trial coordinators knew who was in which group. 

Turning failures into successes

The trial didn’t proceed to phase 3 because there was no statistically significant improvement in the groups taking the Elezanumab.

A few months after the trial ended, I found out I had been on the placebo all along. 

And yet, I still experienced personal gains. During the trial, my EDSS improved from a 6 to a 3. In fact, I worried at first when I forgot to bring my cane with me to my final appointment at week 52. So far, I had only walked short distances around my home without it, and I needed to complete the 500-meter walking test that day.

I surprised myself when I was able to do it, especially considering I hadn’t been able to walk even half that distance at the 6-month assessment without my cane.

I also rediscovered my ability to perform the tandem walk — the heel-to-toe walking exercise that neurologists have us do during exams — for the first time in 15 years. This was the first test I “failed” when I was diagnosed with MS, so it was a huge win for me.

I may not have been receiving the study drug, but the placebo effect is real.

These gains gave me the motivation I needed to push myself a little more outside the clinic. I began taking some risks, like walking through my neighborhood or even going on short hikes with my family — without worrying so much if I would be able to safely make it back home.

Of course, I used mobility aids, but each calculated risk gave me another boost of confidence.

Beyond physical gains

I learned so much about myself — like how strong and resilient I am. Until this trial, I didn’t believe I had the capability to build myself back up — especially after a flare that left me with less energy and mobility than I previously had, and with two little kids now in the mix. It was daunting, but I did it.

I also found new community. I blogged about my experience. I even created a Facebook group to share information about new MS clinical trials and how people could sign up. Several people in the group were also in the Elezanumab trial, and being able to share what we were experiencing helped us feel less alone during the trial.

At the end of the day, I helped advance MS research. Every dead end can lead to new discoveries and opportunities in MS research to give us better medications.

How to find and sign up for clinical trials

The opportunity to participate in clinical trial research for MS is open to so many of us. Some trials research new medications, while others look at different exercises, diet plans, and alternative therapies.

You can search for clinical trials for MS at www.clinicaltrials.gov.

Simply type “multiple sclerosis” into the “condition/disease” field and hit “search.” You can also narrow your search by entering information into the fields for location and/or keywords related to the trial. I liked to input keywords like “remyelination” or “regenerative.”

When the search results appear, they include the name of each study and the location(s) where the study is being conducted. You can click on the study name, and get even more information, like its purpose, the drug(s) that will be studied, the phase of the study, participation criteria, and contact information for the trial neurologists and coordinators.

If you find a study you’re interested in, consider printing it to discuss with your neurologist. Making your neurologist aware that you want to participate in a clinical trial is a key step, but you may need to be persistent and advocate for yourself.

We are the keys to better MS treatments

New medications for MS could never be developed without patient involvement. We are the keys to unlocking new therapies.

When you sign up for a clinical trial, there are risks but also rewards. Without the brave pioneers who were willing to volunteer their bodies to see if a medication could help them, we wouldn’t have the MS treatments we have today.

Together, with doctors and clinical researchers, we can continue to unlock the mysteries of MS and find even better treatments.