Letter: New Medication Offers Hope for Lupus Patients

Hello Jamie, 

I just thought I would send you a little note regarding Benlysta (new medicine for lupus, first one in over 50 years!). 

I have had lupus for 21 years now, along with mixed connective tissue disease and some central nervous system involvement. In 2001 during a bad flare I experienced neurological symptoms that I had never had before, and unfortunately suffered some permanent nerve damage (due to inflammation) in my spine radiating to my right leg. 

Since then, I have not been able to return to work.  Now I started Benlysta June of 2011.  In the beginning loading doses by infusion (given at Potomac Hospital Outpatient Infusion Center) I was worse before I got better ... I wanted to stop the Benlysta about three times due to the constant flare I was in and the worsening of symptoms.

Then I sought out help online and came across Benlysta buddies on Facebook.  All I can say is that the members (then was about 60 now over 400 members)  kept encouraging me to hang in there and really give it time and I'm so glad that I did. 

Today, I have more energy, I am able to get out of the house and have full days of activity; resting of course at times.  Compared to before Benlysta, I was not able to get out but only a few days a month. 

So I am so grateful for Benlysta and Benlysta Buddies and the fact that I convinced my doctor to let me try it. 

I told him, "What do I have to lose?" I had tried everything else out there.  

I am his only patient on this new med and 1 of 4 that are receiving it at Potomac Hospital.  So I am hoping that you will mention Benlysta in your article to help get the word out in our area about this new drug. 

A lot of doctors do want to wait one year before putting their patients on a new drug, however, the final decision is yours—it is your life!  Now Benlysta is not for everyone, however, you will not know until you try it. 

In the beginning of treatments, I did get worse then slowly began to have more energy and less pain...then when I would receive my infusion it would be about one week before I started to feel better and then one week before my next infusion (about 3 weeks.)

I would crash and I knew I needed the infusion.  Now I can safely say that I do not crash one week before, so there is now more medicine, Benlysta, in my body to keep the lupus at bay. 

I do have some days maybe 1 -3 a month where I have my bad days, but I used to have just 1-3 good days a month before Benlysta.  So I would like to encourage lupus patients to consult with their doctors about this medicine and decide if it may be beneficial to you. 

It has given me a great part of my life back and there are no words that can describe that feeling. 

Thank you very much for your attention to my brief story. 

Nadia Monaysar