4 posts tagged “MS research and patients”

Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Posted March 14th, 2018 by

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.”

I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much.

So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach.

The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!)

Next came the EPIC Study — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

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MS research: What’s the latest?

Posted February 23rd, 2018 by

Keeping tabs on the latest MS research isn’t always easy. So, our team of in-house health professionals took a closer look into some of the treatments in the research pipeline for people living with MS. Most of these treatments are in the final phase of clinical development — phase III clinical trials. In this phase, researchers compare the safety and effectiveness of the new treatment against the current standard treatment.

Check out the roundup:

  1. Ozanimod – An oral treatment in phase III clinical trials with the potential to reduce relapses and prevent neurological damage. Ozanimod is reported to work like Gilenya (fingolimod) but with some potential for fewer side effects. A new drug application for ozanimod was submitted to the FDA in December 2017. This application is seeking approval for the use of this agent to treat relapsing multiple sclerosis. It is possible that an FDA decision could be made on this application in the second half of 2018.
  2. Ponesimod – An oral treatment in phase III clinical trials that prevents immune cells from damaging myelin that insulates nerve-cells in patients with MS. A new drug application for Ponesimod is possible within the next couple of years.
  3. Siponimod – Similar to Ozanimod, Siponimod is an oral treatment in phase III clinical trials that may reduce risk of relapse and disease progression. With a new drug application in the next year or two, the treatment has the potential for approval and launch 6-12 months later.
  4. ALKS 8700 – This oral treatment (currently in phase III clinical trials) is a slightly different formulation of Tecfidera (dimethyl fumarate) but, according to Alkermes, has fewer gastrointestinal side effects. With a new drug application in 2018, the treatment could be available 6-12 months later.

In other treatment news:

Laquinimod – You might recognize the name because initially, it showed some promise. More recently it’s performed poorly in clinical trials. Laquinimod is still being developed but in Phase II studies (vs. Phase III which is the final phase of clinical development), which could mean it’s at least a couple years away.

Looking for more info on research and treatments? Join the community today to learn more and connect with more than 60,000 members living with MS.

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