I’ve been on so many medications to treat my lupus over the years that I really felt I was running out of options. In 2012 it had already been a little over two years that I’d had more difficulties with my lupus than had been the case in recent years. There’d been no relief from pain and I’d been stuck on prednisone. I kept a bottle of Tylenol with codeine handy should I need some extra pain meds in order to feel ‘just comfortable enough’.
In January 2012 my rheumatologist decided to try me on Benlysta, the newest (and at the time the only) drug approved to specifically treat lupus. It was scary to consider Benlysta, not only because it was so new (it was approved in March 2011), but also because I’d never taken an IV medication before (other than when in the hospital for something). The idea of going to an infusion center made me think of chemotherapy and severe sickness. I was a bit freaked out. I scheduled my first infusion to happen two months later so that I would have time to research it and make sure my insurance would cover it. I scoured YouTube for videos of people getting the infusion but only came up with one or two. Because it was so new, there just wasn’t much out there as far as patient experience.
When the day finally came, I was a bundle of nerves and excitement. I walked into the infusion unit and saw the big chairs with the TVs. It was a small, bright room, so not terribly depressing and the patients who were there seemed comfortable . I was nervous that I wouldn’t respond well, that I would have a reaction to the medication, that it would be uncomfortable and that it might sting. The nurse gave me two Tylenol and a Benadryl as instructed by my doctor to minimize any chance of any reaction or pain.
Everything ran smoothly. I was hooked up to the pump and began my first infusion. My boyfriend was with me and asked me how I was feeling, and I told him that I was pleasantly surprised. The experience wasn’t bad after all.
The next day I felt good. I didn’t have a reaction over night and only felt tired (could have been the Benadryl). I am still on Benlysta, and while I still have flares, they are not as frequent or long, and I don’t have to take pain meds very often, as I had with other immunosuppresants.
Medicines I’ve been on, but stopped: Imuran, Methotrexate, cyclosporine, Celebrex, CellCept