Page 1 of A New Book
Wednesday was probably one of the most significant days in my life. I began Benlysta, a treatment for Lupus.
Significant doesn’t even begin to explain the day…exciting, nerve-wracking, happy, sad, emotional, hopeful, overwhelmed. The list of feelings can go on and on.
I had cried happy tears a number of times leading up to the treatment. FINALLY I have a chance to treat the lupus rather than the just the symptoms.
I wasn’t nervous in the weeks leading up to the treatment. Overwhelmed? Sure. Excited? You bet. But I was not afraid…until about a day or two before. My nerves kicked into high gear. Considering my irrational fear of having an allergic reaction to medication, what the HELL was I doing having something injected into me? I knew I needed to do this though. I need my life back.
The night before my infusion, my boyfriend surprised me. He invited over family and friends to surprise and distract me and holy cow did it work. So many people kept walking through my front door and I was ecstatic. I stayed distracted and was beyond happy all night. My cheeks hurt from laughing so much. Everyone was there supporting me and I can’t express to them how grateful I am. I went to bed happy and hopeful, and knew that the next day was going to be the start of something great.
Ok…to be honest, I did not want to get out of bed the next morning. Getting out of bed made it real. I was enjoying sipping my coffee and watching the news from bed while my boyfriend packed blankets and puzzle books for me (I was being very selfish). Finally, 10 minutes before we had to leave, I got up, got dressed and was out the door. Better to give myself no time to walk around worrying, right?
For anyone who doesn’t know about “expensive” medications like Benlysta, they won’t order it to be made until you arrive at the hospital/office/infusion center. If they order it and have it ready and then the patient doesn’t show up, there goes thousands of dollars wasted. This means waiting about an hour for them to weigh me, take vitals and call down to the pharmacy in the hospital.
Commence anxiety. Anticipation is a hell of a feeling…I just wanted to get started already. Luckily they were able to set me up with my IV fairly quickly (I have small veins and they thought they’d have to call the IV Team but after one try the amazing nurse got me). They pre-medicated me with Benadryl, which is given to ward off any possible side effects. I also took Klonopin (which is like Xanax) to calm my nerves. At this point I could’ve fallen asleep waiting for the medication with how doped up I was. I had an amazing support system in tow who kept me laughing despite being nervous themselves. It’s tough watching people who love you worry about you. I had to try to be brave for me, but I also had to be brave for them. Being sick doesn’t just affect me, it affects my family, friends and everyone in my life.
Finally it arrived. Like before, I was nervous, excited, and also pretty damn proud of myself. I was doing what had to be done to treat lupus. I had fought for months to get what was needed…and it was happening. The nurses had to act like Benlysta was Chemo, however. I’m not exactly sure why. I know they explained it to me because the waterworks had started, but I was a bit distracted. I’ll be sure to find out next time. Two nurses had to set up the drug dressed in gowns and with gloves while “HIGH RISK” and “CHEMO” is written all over the IV bag. The next thing I knew, it was set up, I was good to go, and I calmed down. Anticipation really can get the best of you. In my head, the worst part was already over, and now I just had to sit back and wait an hour for the juice to get pumped into me.
About 10 minutes into the infusion I had some complications. I’m talking intense burning and pain in my chest, head and hands to the point where I basically yelled for the nurses because I knew something was not right. They stopped the infusion immediately and flushed me with saline. Within a few minutes the pain lessened…not completely, but enough where I didn’t want to rip the IV out of my arm anymore. They called the covering rheumatologist who suggested slowing down the drip because some people tolerate that better. At this point I had so many thoughts racing through my head. I did NOT want to feel that pain again, but I NEEDED this medication in me. I was not going to give up. I want this to work so badly, so I was going to try whatever I could to get this medication inside of me.
Before the infusion, I had spoken to a lot of people about Benlysta and the number one suggestion if side effects were felt was slowing down the drip. So they started me again very slow and I felt fine. Gradually, they increased the speed but I still ended up being there for almost five hours in total. The only side effects I started feeling during the rest of the infusion was intense dizziness. Also, I had a low grade temperature but the nurses said as long as it didn’t get to 101 degrees I didn’t have to call the doctor. My mom held my hand walking to the car and I laid down the rest of the evening. I woke up a few times in the middle of the night, but one of the side effects is insomnia so I knew that was normal.
It’s been five days since my first infusion, and I can say that I don’t feel any worse than I have felt with my flare the last few months…just different. Dizziness, migraines, nausea, joint pain and feeling like I have the flu. I’ve also had a low grade fever which comes and goes but hasn’t gotten that high. I can’t really get up and walk around without feeling dizzy so I’ve been in bed watching lots of netflix and reading when my headaches calm down for a bit.
Infusion #2 in a week and a half…bring it on. 💪
Check out the video below to see how Benlysta works, or click on the Benlysta Website to read more about the medication.