My Benlysta Journey

When I was first diagnosed with lupus in the summer of 2012, the first medication my doctor started me on was hydroxychloroquine. I was on that for about nine months. But I saw no improvement; the pain, the fatigue, I felt like I might as well be taking a placebo. I’m aware it’s the staple that they pretty much start everyone on. For some, it works on its own. For me, it didn’t work by itself.

When I saw my rheumatologist in March of 2013, I basically said we have to do something because this isn’t working. I was miserable. My feet were hugely swollen and painful to walk on. Working as a bedside nurse was becoming more and more difficult.

At that time there was a newer medication that she hadn’t used much, called Benlysta. It had only been FDA approved for about two years. She was skeptical but said let’s go for it.

Sticker shock

Getting the medication wasn’t as easy as her just putting the order in. The medication is around $15,000-$20,000 a month and at the time, hopefully things had changed, many insurances wouldn’t cover it. But thank goodness for Benlysta Gateway, a program that helps people get the medication without having to pay for it. Once we got that set up, I got a call from the infusion center and got my appointment set up.

My first appointment

My first appointment was good! I got the standard Benadryl and Tylenol pre meds to help prevent any allergic reactions. I didn’t feel much except just exhaustion. I got three doses (I think) two weeks apart, before I started getting them monthly. 

By the time I got to the monthly doses, the side effects hit hard. The nausea, exhaustion, and just an overall feeling like I was hit by a bus. A lot of people in my lupus community called it the Benny Bus because it feels like you get run over by a bus. I think everyone who is chronically ill has to have some dark humor to get through.

I would like to say that it got better but it didn’t. They did start giving me IV Benadryl and Zofran and Tylenol before my infusion and that really helped. I didn’t feel so nauseous during the infusion or for a few hours after. But I was still down for a couple days after my infusion. I would go get it at 3:00 pm on a Friday after work. So that way I could just go straight home and rest all weekend.

Why I do it

People don’t understand why I put myself through all this. But for me, its being in bed feeling bad for a couple days, but getting 2-3 good weeks a month. Versus a handful of good days a month. It is so very worth it. 

I know it seems crazy that we knowingly do this. That I knowingly put something in my body that knocks my already malfunctioning immune system down. Something that makes me feel so awful. It's just nuts. Suppressing part of our immune system actually stops it from attacking our body. Thus slowing/stopping lupus signs and symptoms. I’ll always take anything that will give me a couple good weeks.

I got the infusion for almost 10 years. At some point, I think 2015, we had exhausted all my veins so I had a port placed. Which was amazing! One stick for blood work and my infusion. Versus sometimes 4 or 5 sticks and only getting the infusion, but no blood work. Just bruises.

The port worked well until it didn’t and I had no issues with it or my infusions. Other than missing months at a time due to being sick. Because you can’t get your infusion if you are sick or on antibiotics.

Changing to the injection

In 2023 my port flipped and I got a new port that ended up being infected and caused me to go septic. Due to that I had to switch to the injectable Benlysta.

I didn’t think I’d like it because I had tried it before and didn’t. But I like it so much better than the infusion. It’s quick and easy to administer. I don’t have the down time that I did with the infusion. Also, if I have to miss a dose because I’m sick, I don’t have to wait weeks for my infusion center to get me in.

I feel like I also get a more constant amount. Whereas with the infusion I could tell when it would run out at the end of the month.

It’s amazing how Benlysta went from something we really didn’t know much about to a medication that so many people are on. It really has been my saving grace. I’ve tried many other medications in combination, or on their own over the years, and nothing worked as well for me.