Does a new drug for a chronic disease actually work like “magic”?

Practical magic

“11 hours until my veins are infused with MAGIC!”

When Kat posted that as her Facebook status, I was torn between being so happy for a friend, and cringing over what she was about to put herself through.

At only 28, Kat suffers from lupus. It’s a chronic disease that misguides the immune system, prompting attacks on healthy tissues and organs. This increases risk of heart disease and cancer, while causing symptoms that include extreme fatigue, skin rashes, and painful joints.

And when I say Kat suffers from it, I don’t just mean the pain and the fear. She’s an artist. And some days the disease is so debilitating she can’t make the simplest movements. As she said, when your brain is so much stronger and more passionate than your body, it’s like living in your own private hell.

But in reality, not being able to create her art is not the greatest threat she faces…not by a long shot. Lupus is sometimes fatal, and it can’t be cured, only managed.

So the idea of a magical treatment for lupus is seductive. But this might just be a little bit of black magic.

As a friend, I’ve wanted to warn her but, at the same time, I know she doesn’t want to hear it. So while I am biting my tongue with Kat, I wanted to make sure you know the real dangers of this “magical” treatment.

Complications piled on complications

Benlysta is the first drug approved by the FDA to treat lupus in more than 55 years. So it’s no wonder that patients like Kat are pinning high hopes on its success.

But when Benlysta was approved last March, Michele Cagan sent out a Code Red warning to HSI members.

The problem: According to the FDA, Benlysta research “suggested, but did not definitively establish” that the drug might reduce severe flare-ups of lupus symptoms.

But more troubling was a higher rate of serious infections and death in patients taking Benlysta compared to those taking a placebo.

Now, you might think if I were a friend, I would warn Kat about these critical details. But along with her optimistic facebook posting, she actually included a link to the FDA announcement that made those dangers very clear.

I suppose when you have such an overwhelming disease, a little magical thinking can overcome fears of potential side effects. Or maybe she’s so frustrated she thinks the risk is worth it.

Before Benlysta appeared on the scene, lupus was commonly treated with immune system suppressants, malaria medications and steroids. In some cases these treatments decrease inflammation and address specific symptoms of lupus, but the side effects of the drugs can sometimes complicate the condition rather than relieve it.

So I genuinely hope Benlysta is a huge success for Kat. But if it isn’t as magical as we hope, there is a solid, safe alternative.

A few years ago, Northern Ireland researchers at the University of Ulster conducted a study that tested fish oil, rich in omega-3 fatty acids, on more than 50 lupus patients.

After 24 weeks, researchers found a significant decline in disease measurements for those taking fish oil compared to placebo. Fish oil helped relieve fatigue, inflammation, skin rashes, and neurological problems. And all of that added up to improved quality of life — especially for those who were able to reduce their steroid use.

Adverse side effects: zero.

Lupus mostly affects women, and most of them have a family history of this mysterious disease. If you have a friend or family member with Lupus, let them know that their options are certainly not limited to FDA-approved “magic” drugs.

But my fingers are crossed for Kat.

Sources:
“FDA approves Benlysta to treat lupus” Medicine Net, 3/9/11, medicinenet.com

“CODE RED: Lupus patients BEWARE! New drug could be a death sentence” Health Sciences Institute, 3/16/11, hsionline.com

“The Clinical Effect of Dietary Supplementation with Omega-3 Fish Oils and/or Copper in Systemic Lupus Erythematosus” Journal of Rheumatology, Vol. 31, No. 8, August 2004, jrheum.com