My Benlysta Review

Who would have known a drug that works for many others would start off with me so bad? I tried Benlysta and of course, the injection burns as you are getting it put in. When I first started taking it, I was so 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 have not slept in days. I had slight nausea but that was to be expected.

Coping with how Benlysta is given

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 feeling tired. Now I am experiencing back pain and it's so bad to where 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 of lupus and treatments

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, she told me that it looks like I was not sleeping enough. But you really do not have that option 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 it a shot

I think I am going to try this drug for another month and then if I do not have a better outcome I am going to give up on the injection. I want the drug to work so bad because I am not one person who loves hospitals. I cannot stand having to be in the hospital and stay in the hospital 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 am going to 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.

More on this topic

Continue reading part 2 soon.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.