My Benlysta Review
Last updated: November 2022
Who would have known that a drug that works for many others would start with me so badly? I tried Benlysta, and of course, the injection burns as you are getting it put in. When I started taking it, I was scared to sit there and inject myself. I kept contemplating whether I wanted to do it or not. Once I took the injection. The first 2 days, I had an upset stomach and diarrhea. This scared me a little. I felt that I was not starting off too well. The next few days became very exhausting. I was over-exhausted and felt like I had not slept in days. I had slight nausea, but that was to be expected.
Coping with a weekly Benlysta injection
Having previously taken rituximab, the Benlysta was a completely different experience. The rituximab, of course, was a 6-hour process every 2 weeks, and the Benlysta is 1 injection every week. Week 2 was a little different. I still experienced weakness and felt tired. Now I am experiencing back pain, and it's so bad that I can not bend completely over. This drug is now starting to affect my daily life because I go to the gym at least 5 times a week. Now with this drug, I find myself going a little less.
Exhaustion from treatment side effects
It is so exhausting being a new mom and trying to stay in school and on these injections and other meds. I feel like I am overloaded. My mother told me that my eyes were swollen, and she told me that it looked like I was not sleeping enough. But you really do not have that option of being a parent. The only option you have is to sleep when the baby sleeps, and that is even harder. Now I am in week 3, and I still have lower back pain, and honestly, I am so over it. I feel that drugs always have extra side effects when it comes to getting worse before it gets better.
Giving Benlysta time to work
I think I will try this drug for another month, and then if I do not have a better outcome, I will give up on the injection. I want the drug to work so badly because I am not one person who loves hospitals. I cannot stand having to be in the hospital and stay there for weeks at a time. Then how it can change your life hurts even more. It hurts more because here you are, feeling like you are letting yourself be a lab rat to get results. The only thing I am not hoping for is that I lose all my hair again. I do not want to go through the whole process of my skin changing and hair falling out because it brought so many insecurities to my life. Now I look at the possibilities of good outcomes, and I will keep trying this until I get a good one.
Not giving up yet
I feel like I would be giving up too easily, but you know, every drug adds on another drug and then another drug. Then you are taking like a million pills to counteract another drug. It is not easy to walk around with a zip lock back full of pills, then people start to think that you’re a drug addict or something.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?