So I had my 3rd infusion last friday for Benlysta. The nausea was nonexsistent, but I was still pretty tired for two days after. Luckily I can handle being tired. I did however realize another side effect I was having... after 48 hours of sheer exhaustion I deal with several days of insomnia. That's right as of today (Wednesday) I have had maybe 7 hours of sleep since Sunday night. You would think I would be exhausted, but really I'm not. I hate being awake all night. It is so boring. I do go watch TV, but our couch and chair are so incredibly uncomfortable that I begin to hurt all over so I can't do it for long.
I have realized that the Benlysta is begining to work. First, I have a monthly flare with my cycle and I didn't get one. And second, I worked the Seattle Lupus Walk and even after all that no flare. I have had some minor set backs with my pluerisy, but that I have been able to deal with.
It is really exciting to know it's working. I'm still causious about talking about the fact that it's working. But I secretly know that it is. It is so exciting to think it might be working. 11 years of medication after medication.
Now my infusions are monthly, so I guess time will tell.
3 comments:
Glad it's working for you! I hope you are able to get some rest soon, that's no fun and well... you need your rest!
So happy for you! I'm thinking about trying Benlysta. I'm happy to hear positive feedback.
I just started Benlysta yesterday. It's so good to hear some positive comment on it. I felt really strange after the infusion. Kind of dizzy, not feeling like myself and very tired. Then I had nightmares all night. My husband kept waking me up. Today, feeling better but still tired. You, too?
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