Hi, my dad has been diagnosed with lupus (SLE) 5 years ago, but probably had it for far longer since it took quite some time and money to get all the tests done and confirm this diagnosis. He’s been on steroids for the whole time, on and off, since he was gaining too much weight while on them that it became dangerous for his heart. He became almost diabetic. Stopping steroids did help, but as our rheumatologist told us, there’s little else he could do. For our appointment last month my dad had a very bad flare up and rheumatologist suggested he tries benlysta infusions. Luckily our insurance covers them since they are the fairly new treatment and dad has received two infusions so far, there is coming up next week after which he’ll receive them monthly. But so far, we’re bot a bit disappointed since there really are no obvious signs things are getting better.
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Hello Guest.... From my research on Benlysta, it is very expensive, around $28,000 a year. It is shown that it is not very effective with patients with Systemic Lupus Erythematosis and patients of color do not have much improvement at all on Benlysta. With the side effects that accompany Benlysta, like nausea, fever, and diarrhea, it really isn't worth staying on the treatment. I hope your father finds relief with some type of therapy that doesn't have harsh side effects.
Has anyone else been on Benlysta for Systemic Lupus Erythematosis? How did it work for you? What side effects did you have?
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