I Support Benlysta….and I Don’t Have Lupus

 

Benlysta is the first new drug approved for Lupus in 50 years. It’s not for everyone with Lupus, but for those who can benefit, that’s awesome! Now, I know some are thinking, I don’t have Lupus, why should I care about Benlysta? You don’t have Lupus – why are you writing an article about Benlysta. Well, guess what? I’m gonna tell you what the news of Benlysta means for me – someone living without Lupus.

Benlysta signifies progress. We hear all the time about new advances in joint replacement, heart disease or erectile dysfunction. However, it is rare that you hear of autoimmune progress. The arrival of Benlysta on the market shows that, even slowly, progress is being made.

Benlysta gives me hope. It’s shows me that someone, somewhere is thinking about what can be done for Lupus. They may find more uses for Benlysta as more is discovered about autoimmune diseases. Benlysta shows that something is changing.

I may never benefit from Benlysta, but I’m glad to see it here. Who knows what the next development might be?

 

Article written by Staff Writer, Agnes Reis

 

Agnes is a nursing student in Minnesota. She was diagnosed with CFIDs in 1999 followed by fibromyalgia the following year, along with lifelong allergies, asthma and migraines. She can be found at brigid22.wordpress.com or @brigid22 on twitter, but cautions twitter followers that there’s a heavy dose of sports and nursing along with the spoons.

©2019butyoudontlooksick.com
  • Annette

    I just read an interesting article on Monday from the Seattle Times (see below) that states “The medication isn’t perfect, Dr. Richard Brasington, professor of medicine and rheumatologist with Washington University School of Medicine, that led the research in St. Louis said. It stands to help fewer than half of the cases, he said. Also, it doesn’t work well on black people as a group, although some individuals have benefited. The reason remains a mystery.”
    “11 patients needed to treat for just one to benefit” is significantly different than “helping fewer than half of the cases”.

    Perhaps more importantly, is the fact that ANY research progress is still progress. And that Agnes, a non-lupie gets it! Thank you!
    (http://seattletimes.nwsource.com/html/health/2014744287_lupus14.html?syndication=rss)

  • Patty

    Thank you! You get it! This means so much after all of the negative words I have heard lately about who can take it and who can’t! It is a step forward for all of us!

  • Be careful, Agnes, before you leap onto the Big Pharma marketing bandwagon. The FDA Advisory committee approved this drug by a 13-to-2 vote, despite reservations that the drug was “only marginally effective”. This is important information for patients who are vulnerable and desperate enough to purchase almost anything that offers even a glimmer of hope for relief.

    Based on “number needed to treat”, about 11 patients must be treated for just one to benefit by taking this drug. Benlysta was not tested in severe forms of systemic lupus erythmatosis involving active damage to the kidneys or central nervous system. Patients with active lupus that involved the kidneys were actually excluded from participating in the trials. And study participants of African American descent did not significantly respond to this drug.