My diagnosis is quite complicated; as of right now my rheumatologist believes I have Lupus and Rheumatoid Arthritis. In the last year or so my bloodwork has pointed more towards Lupus but I still have active arthritis in several joints. Before this appointment I had my typical round of bloodwork done; it appeared that my inside’s were going crazy and my inflammation levels were high. So when my September (2019) appointment came around we started talking about making a change in my medications. At the time all I was taking to manage my disease was Plaquenil.
We started chatting about the options. Because of my overlap, we had various options for biologics to try, but it was still limited. Some arthritis medicines have a history of worsening lupus symptoms so I can’t take all of them. My rheumatologist, whom I love, suggested we choose a path; lupus or rheumatoid arthritis. This had never been suggested to me with my pediatric rheumatologist but because of my overlapped diagnosis, symptoms, and limited medication options, this made total sense. Due to certain levels in my bloodwork and my symptoms, my rheumatologist suggested Benlysta. Benlysta is the first-ever approved biologic medication for Systemic Lupus, and it’s supposed to improve joint pain and inflammation as well. This sounded like a win-win for me.
For me though, this decision was a tough one. I was on methotrexate for years with terrible side effects and few results. One of the biggest reasons I came off of methotrexate was because of what it was doing to my mental health. No, the medication itself wasn’t causing it, but the physical act of doing an injection every week was tough for me to handle. Every Sunday I would just sulk around and feel bad for myself. I didn’t think it was fair that I had to do an injection once a week, it definitely wasn’t “normal”. Sometime before I went to college, I convinced my doctor to let me come off of it. That day I swore I would never go another injectable medication… and the world laughed.
So, when my doctor suggested Benlysta and explained that it was a biologic medication I knew it had to be an injection or infusion. I stiffened in my seat. This seemed like a huge decision and this was only my second appointment at an adult rheumatologist without my Mom. So I did what I knew I had to, I started asking a lot of questions. About the medication, how it works, what side effects can be common, how long it takes to start working, etc. If I was going to make this decision to start a new injectable medication I was not going to take this lightly. Deep down, I knew this was the best decision, and I already was creating a great relationship with my new rheumatologist and really trusted her. At the end of the appointment, we decided to move forward and start Benlysta. A few things had to be approved beforehand so it was still going to be some more time before I started, but I tried to make myself feel confident in this decision.
Like I said, deep down I knew this was the best decision.
To be candid, I walked out of the office, into my car and took 5 minutes to just cry, before I started calling my parents and boyfriend to explain all of this. I felt like I was 13 all over again starting my methotrexate for the first time. I didn’t think it would be this hard. It shouldn’t have been this hard. But walking into this appointment I was not expecting it to go this way. Truth is, I was in complete denial about where my health was at this point. I was telling myself I was 100%, I was telling my parents I was feeling great, and I convinced my boyfriend and friends I was feeling fine. After this appointment I had to be honest with myself, I was exhausted, my joints were swollen, my labs were a mess, my doctor was concerned about my liver levels, I couldn’t keep trying to convince myself I was okay.
When I called my Mom and told her I was going to be starting a new medication she was clearly confused, and rightfully so. I had been telling her I was feeling good. I wasn’t trying to lie to her, I was lying to myself too. I remember feeling terrible in that moment because she felt like she should have been doing more to help me, but there’s nothing she could have done. I had to start being honest with myself.
Everyone I told basically reacted the same way; confused but supportive.
Once I accepted the fact that this was happening (basically in a few hours) I started getting excited. What if this new medication was the answer to all of the pain I have been experiencing, all of the fatigue, and swollen joints? Then, I did a bad thing. I joined a “Benlysta Buddies” Facebook Group. Please note: I have since grown to love this group and all of their support. But, I joined it before I started the medication and I started reading about everyone’s random side effects to it. I scared the crap out of myself before I even was approved by my insurance.
The process to get it all approved took longer than expected. I didn’t get my first round of injections sent to me for about 5 weeks after my doctor and I made the decision. They came in a big box, in a cooler pack, with a packet of instructions. I had the option to do my first injection at home or in the office and I opted to do it at home.
The first one was really really hard, and so was the second one, and the third. All of the emotions from my teenage years resurfaced. I cried that it wasn’t fair to me, wasn’t fair that my boyfriend had to help me do it. It also didn’t help that it STINGS, real bad. But eventually, it got easier. Each injection became a little more manageable. Now after a few deep breaths, I’m good to go. It’s an auto-injector, so it’s really easy to use, but because of the terrible sting, my boyfriend still helps me administer it.
I have only been on Benlysta for about 3 months, and it can take 6 months to a year to see its full effect. The waiting is hard, but after just about 2 months of being on it, my liver levels were back to normal, which was truly incredible. I also noticed before I started Benlysta my hair was coming out like crazy, common with lupus, and this has since stopped as well. I haven’t yet noticed a huge improvement in my energy levels or joint pain but I do still have faith that Benlysta is going to work for me.
Sometimes that’s all you need, a little faith.