Fortunately, many researchers have ideas about where to look for answers, because we know that Benlysta works by reining in a type of immune cells called B cells.  B cells play an important role in the normal immune response, but when inappropriately activated in a lupus patient, they produce harmful elements that cause the damaging effects seen in SLE.  Researchers think that measuring these may provide clues to help us determine whether an individual patient is likely to respond to this particular drug.

So where exactly might these clues be found? One place to look is among the autoantibodies that doctors routinely test for in lupus patients.  B cells also make an arsenal of other factors that they release into the environment around them, boosting the fight against invading germs but also waging war against a lupus patient’s own tissues and organs.  Finally, B cells display tell-tale markers on their outside surface when they are in attack mode. 

A number of outstanding scientists have built their careers upon studying B cells and how they contribute to autoimmune disease. They are now poised to study these factors in the context of Benlysta treatment, with the hope of answering our questions.  The approval of this drug is a major milestone, but it is not the end of its story.  The next chapter will hold answers that will allow doctors to use this medication to its greatest benefit in treating patients with SLE.

We finally get to ask that question about lupus, after the FDA approved Benlysta, the first new drug approved for SLE in over 50 years, in March 2011. 

Patients and researchers alike are asking questions …  Who needs to take this drug?  How is it different from the medicines that doctors were already using?  How do we know it’s going to work? How do we know that it’s going to work better than those other medications?

There is a recent (within the past year) article from Mayo Clinic that I’ve attached here, that I think addresses some questions about the incidence of lupus in Minnesota.  It is focused on the overall lifetime risk for development of autoimmune diseases, including SLE.

“The Lifetime Risk of Adult-Onset Rheumatoid Arthritis and Other Inflammatory Autoimmune Rheumatic Diseases”

Article published in:
Arthritis & Rheumatism
Vol. 63, No. 3
March 2011

I earned my Ph.D. from the University of Minnesota and have continued my research as a member of the University’s faculty.

I love the outdoors, running, biking, and swimming, and spending time with my husband and two young daughters.

My story with lupus begins in 2003 when I was only 20 years old. I began experiencing some minor joint pain in my hands, and after a few months, decided I should get it checked out.  I left the clinic that day with a lupus diagnosis.  Being young and ignorant, I chose not to treat the lupus and deal with the minimal effects I had.  I believed I was mis-diagnosed and went on to live my life.

Fast forward 5 years when I was pregnant with my son, Nolan.   I started seeing a rheumatologist for the first time while I was pregnant just to make sure I would be able to handle pregnancy normally. While seeing my doctor, she too almost believed I was mis-diagnosed.  I showed no signs of lupus.  She warned me that after I delivered my son and I started to experience symptoms of lupus,  it was a major sign that I did in fact have it because often while pregnant, your body will stay in remission and after delivery the lupus will flare up.

Four short months after I delivered my son, the symptoms appeared drastically.  My whole body hurt, and my hands were in so much pain I couldn’t pick up or hold my son without screaming out in pain.  I was exhausted and trying to take care of a newborn.  I went back in to my rheumatologist in tears, and she confirmed my assumption that I did have lupus.  After doing a few more tests, the doctors came to the conclusion that my kidneys were not functioning normally, and they ordered a biopsy.  The biopsy returned devastating news that I had stage 4 kidney disease.  I immediately started an intensive steroid program, monthly cytoxin, and numerous other medications.  After two rounds of cytoxin not working, they switched me to cellcept, which I am still on and has worked remarkably for me.  I went through a really hard eight months, but by my son’s first birthday, I was well on my way to remission.  I’ve now been in remission for 2.5 years and have never felt better!

I stay in remission by eating healthy, exercising and staying current with my medications.  When I reached remission, my family hosted a benefit in my honor, and we raised over $4,000 that we gave to the Lupus Foundation of Minnesota.  I was also honored to be one of the ambassadors for the Lupus Walk in the summer of 2009.

For me, lupus is a daily reminder to live one day at a time; rely on family, friends and God in times of need, and share what God has given me to help others.  Lupus may be a disease, but it is not a death sentence.

Almost all people with lupus have experienced being on prednisone at some point. Some of the main side effects of prednisone include mood swings, difficulty sleeping, and weight gain, particularly in the face, which is often called “moon face.”

When I was put on prednisone, I was the most depressed I had ever been. I was sleep deprived, unrecognizable and angry. In a post on my personal blog, I wrote, “I know some people look at me and don’t know what to say. Others say, ‘You’re beautiful,’ ‘I can’t even tell,’ or ‘It’s barely noticeable.’ While I appreciate these comments very much, I know they’re not true. I look horrible.” That was a pretty raw post, but I started my blog to write how I was feeling and to someday look back and see how far I had come.

If you’re on prednisone, you may be having these same feelings, but know that you’re not alone. Many of us have been down the steroids road before. Some things that helped me were to talk to people, journal about my experience and how I was feeling, limit salt intake and stay active. Being positive was also a big help. I focused on knowing that when the steroid dose got lowered, the side effects would slowly disappear.