169 posts in the category “Research”

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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The lowdown on generic MS medications

Posted March 6th, 2018 by

From FDA approvals to availability and safety, generic drugs are a popular topic in the PatientsLikeMe MS forum (more than 15 threads!). To help you stay in the loop about what generics are and what’s out there for MS, we checked in with our team of in-house health professionals. Here’s the scoop…

Let’s start with the basics: What are generic drugs?

According to the FDA, “a generic drug is a medication created to be the same as an existing approved brand-name drug in dosage form, safety, strength, route of administration, quality, and performance characteristics.”

So what sets the brand-name versions apart?

Generic and brand-name medications work the same way and provide the same clinical benefit. Generic medications have the same active ingredients as brand-name medications, but generics only become available after the patent expires on a first-of-its-kind (brand name) drug.

Coming soon:

  • Ampyra (dalfampridine), the only FDA-approved drug indicated to improve walking in adults with MS, is anticipated to have generic versions available sometime in summer 2018.

Currently available MS generic drugs:

  • Glatopa: Glatopa 40 mg/mL is an FDA-approved generic version of Copaxone 40 mg/mL for patients with relapsing forms of MS. Glatopa has been determined by the FDA to be therapeutically equivalent to three times-a-week Copaxone, and is a fully-substitutable medication. Glatopa is available by prescription.
  • Glatiramer acetate: 20 mg/mL (daily) and glatiramer acetate 40 mg/mL (3x weekly). These two FDA-approved injections are also generic versions of Copaxone, and can be expected to be as safe and clinically effective. Both are available by prescription.

On the horizon:

  • Gilenya‘s patent is set to expire in 2019, opening up the path to generic versions soon after.

Want to learn more about what members are saying about their experiences with generic MS medications? Join the conversation on PatientsLikeMe.

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