Since being diagnosed with lupus nearly 7 years ago I’ve been treated with several drugs like plaguenil which I was allergic to, methotrexate, prednisone, cellcept and currently the immune suppressant azathioprine and the first new drug invented in over 50 years just for lupus called Benlysta. I’ve been on Benlysta now for about 2 years. The first improvement I noticed was my energy slowly increasing. I noticed my naps during the day were getting a little shorter. I then noticed decreased joint pain and that is what sold me on this drug. However, not everyone is able to take or continue Benlysta treatments. I am fortunate and grateful that I can. While there is no cure for lupus this new treatment option has certainly helped me. I still have lupus flares but I’m living and able to enjoy life more than when I was first diagnosed even though I’m having pulmonary problems and on oxygen.
Since having lupus my veins have become awful so I had to have a port put in which has been a blessing. It makes my life and the nurses life so much easier. Because I have a lot of drug allergies they always pre-medicate me with steroids and benadryl. I come home and take a really long nap. The main side effect I always have from my treatment is a bad migraine. It usually doesn’t hit me until I am home. I put an ice pack on my neck and take Maxalt for the migraine.
I just had a Benlysta treatment yesterday and it couldn’t have come at a better time. The joint pain in my hands had gotten so bad I was barely able to squeeze the toothpaste out and onto the toothbrush, I couldn’t unhook my bra and it hurt to hold a glass of water. Until you have problems like this it’s those little things like squeezing toothpaste out that we can take for granted. So I come up with my own inventive ways to get the job done.
The day after my infusion I take it easy because I’m tired and I always turn really red and feel hot. I stay inside in the cool air conditioning and cuddle up with my furry companion Roxie. And I am happy to report that my joint pain in my hands is already starting to feel better and for that I am most grateful.