11 results for “Tysabri”


Posted September 22nd, 2011 by



PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs

In the first report of a series on Multiple Sclerosis (MS) disease modifying therapiestysabri(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world.

“People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better with patients in treatment planning while manufacturers can use them to better design adherence programs to reduce inappropriate discontinuation.”

This 40-page report — titled “Does Tysabri patient experience in the real world justify its value?” — analyzes the experiences of more than 12,000 MS patients who are taking, or have taken, Tysabri or other DMTs.  In the report, PatientsLikeMe evaluates:

  • Tysabri Price vs. Value: Is this drug appropriately priced given real-world evidence regarding efficacy and side effects?
  • The Patient Voice in Treatment Discussions: Of the 4,083 patient conversations mentioning one or more MS DMTs from January-June this year, Tysabri commanded 27% share of patient voice.  What percentage of Tysabri-related discussions were focused on progressive multifocal leukoencephalopathy (PML) or JCV (John Cunningham virus) antibodies?
  • Efficacy and Side Effects: More than half (55%) of the 500 Multiple Sclerosis patients who have taken and evaluated Tysabri experienced “moderate” to “major” efficacy compared to interferon therapies which average 33% moderate to major efficacy.

The report is available for purchase at http://partners.patientslikeme.com/tysabri; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter and the PatientsLikeMe blog.]

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PatientsLikeMe member lscanlon

PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases

Posted November 16th, 2008 by

tysabrilogo.gifPatientsLikeMe recently released a new PatientsLikeMeListen™ report: “Did the July 2008 PML announcement affect the Tysabri brand?” Among our findings, the report reveals that MS patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases.

When we originally covered this topic back in August,  the discussion among our members was just starting to heat up.  This report analyzes the patient perspectives shared on our site after the initial PML announcement, and shows how they are empowered to educate themselves about this topic.  Take a read and let us know what you think!

PatientsLikeMe member dwilliams