An infusion backpack, coloring mandalas, and being up to date on errands are just some ways those living with rheumatoid arthritis (RA) prepare for Rituxan infusions.
Starting Rituxan, or continuing with it as part of your treatment plan, can bring on a range of emotions. You might feel scared and shaken yet hopeful and excited. These infusions require a lot of you — being in a medical facility for 3–6 hours, sometimes even longer. Any side effects of the infusion can also be difficult. Read about what to expect the day after a Rituxan infusion.
So, support and advice from fellow RA warriors are always needed. Here are some firsthand tips from people who have experience with Rituxan infusions.
Rozina, who started Rituxan in 2020, suggests taking time off after an infusion if your schedule allows it.
“I was so nervous when I started Rituxan infusions, but it turned out to be the best medication for me. I have had no RA-related pain or flares since starting. I schedule my infusions for Thursdays and always take Fridays and weekends off work. I need this time to sleep and recover.”
Laura, who has lived with RA since 2000 and started Rituxan in 2018, explained that preparing her home is the best way to make sure she feels her best after an infusion.
“The best way I prepare for my infusions is to stock up on groceries, have simple meals available in the fridge, and catch up on laundry.” This way, Laura explained, she is ready for whatever Rituxan may throw her way.
Dani explains how making sure she is comfortable during her infusions helps reduce anxiety and stress. She has been living with RA since 1991 and has been using Rituxan since 2015.
“My infusion has to run over 8–9 hours in a local hospital setting. I pack myself an infusion backpack that has all the things that make me happy inside. This includes a blanket, a neck rest, a notebook for my thoughts, as well as inspiring and encouraging stickers that I pass out to others who are on similar journeys in the hospital with me that day … Although the anticipation of my infusion days and actually sitting in the chair on that day is still hard for me, it’s the best thing that ever happened to me and my RA.”
Cathey mentioned that “ice packs are very helpful during the infusion.”
Rozina explained why they helped her: “I did have a high heart rate, high blood pressure, and headaches during my infusion in the beginning, but slowing down the rate of the infusion and using ice packs on my neck and back really helped.”
“I find drawing and coloring mandalas to be very relaxing during my infusion.” This was Simmi’s advice, who started Rituxan infusions in 2022.
Shantana also explained the importance of certain types of activities during infusions. “Despite being on treatment for RA for many years, I still have anxiety on treatment days, and I still learn new things about myself each time. I found journaling to be especially helpful.”
Marlen received a diagnosis of RA in 2018 and started Rituxan in 2021. She explained: “I have no side effects from Rituxan, and I haven’t had a flare in over 3 years. It took about a month to feel better after my first round of infusions, so be patient.”
A fellow RA warrior, Janet, started Rituxan in 2017 and had a similar experience. “Rituxan infusions have given me quality of life. It’s cumulative, so be patient if the first infusions don’t give you dramatic improvements right away.”
Shantana started Rituxan in 2016, 11 years after her official diagnosis of RA in 2005. She shared how being a Woman of Color has affected her experience.
“I definitely felt the inequities in our healthcare system firsthand throughout my journey on Rituxan. I felt I was dismissed more, and even misdiagnosed more, before I was taken seriously. I had rare, serious, and unfortunate reactions to this medication, and I feel my treatment was delayed resulting in poorer outcomes. If you have concerns about anything, voice them. Tell everyone involved in your care, as you never know who can help advocate for you.”
Continuing, she explained: “Although I am no longer on Rituxan for RA, I would tell someone starting their Rituxan journey to be kind to themselves and give yourself grace. There are a lot of emotions with RA and this type of treatment, so be sure to allow yourself to feel them all.”
Shantana has written more about how her quality of treatment has been affected and is the founder of Sister Girl Foundation Inc. If you have concerns at any point in your Rituxan treatment journey, be confident in your experiences and voice them.
Doctors can use Rituxan infusions to treat RA. They can require time from your schedule and might cause some side effects, meaning you need to rest and prepare. I hope these tips will help you on your journey.
“Although the anticipation of my infusion days and actually sitting in the chair on that day is still hard for me, it’s the best thing that ever happened to me and my RA.”
Dani B, living with RA for more than 32 years, started Rituxan in 2015.
*All quotes were shared with permission.
Medically reviewed on July 28, 2023
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