Lupus and…Benlysta Update – I Think It’s Working!
I’ve had seven Benlysta infusions since January. Once a month I head to the Cancer Center, at a nearby hospital, where they hook up an IV to give me an infusion of a brand new Lupus drug. Benlysta is the first drug approved by the Food and Drug Administration, for Lupus, in over 50 years.
The side effects were very difficult in the beginning…terrible body aches, fatigue, nausea, joint pain and migraines. After my first infusion I was in bed for almost a week. It definitely made me wonder if it was worth it. Was I really supposed to feel worse after being infused with a drug that was supposed to make me feel better? Since the side-effects were different after every infusion, I never knew what to expect.
Family and friends asked me every day, “Is it working? Do you feel better yet?” I cringed every time I heard these questions because I wanted to say, “Yes,” but, he truth is, it wasn’t working and I didn’t feel any better. My doctor told me to be patient. He said I should start to notice a difference at the six month mark.
He was right. I think the turning point came after my 6th infusion, in May.
Until then, I had felt like I was going to collapse around 3:00 every afternoon. The fatigue really set in, at that hour, and my joints were aching…every day I wondered how I would manage to pick the kids up from school. Some days, I was nearly in tears as I parked near school and walked the short distance to the playground where Daniella and Dylan are dismissed. I have wonderful friends who always offer to pick the kids up for me but, I want to do it…I need to do it. I just can’t give in to it. I can’t stay home in bed.
Then one day in May, after infusion #6, I started to notice that I had more energy during the day and my joints weren’t aching quite as much on those 3:00 trips to school. I was able to run the kids around to all of their activities and even make dinner! I wanted to shout from the rooftops, “I think this might be working,” but, I was afraid I might jinx it. So, I waited.
I had my 7th infusion on Monday and had just two days of side-effects. Today, I feel pretty good…and that’s not something I’ve been able to say, very often, in the last year and a half. There is no cure for Lupus…but, Benlysta helps alleviate some of the symptoms. I still have bad days but there are fewer of them now. So, while I’m not ready to shout it from the rooftops, just yet, I am ready to say the words, “I think Benlysta is working for me!” That’s a huge step for me. You may hear me shouting it out after infusion #8, in July..stay tuned!
**Click here to read more about how Benlysta helps to alleviate Lupus symptoms**
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