Infusion Tips When Dealing with Lupus and Other Illnesses

There are several medications that people with lupus take as treatments. The most common are pills which are taken orally and then there are monoclonal antibodies which can be given through an IV or an injection.

Tips for lupus infusions

Getting an infusion can seem really scary and daunting especially when you are used to only taking pills. Because of my non-Hodgkins lymphoma diagnosis, I had to start a monoclonal antibody called Rituxan (Rituximab). Since this was also used off label for lupus, my doctors were curious to see how my body would react to it. After going through several infusions, I was very thankful my side effects were very minimal and the whole process was not as bad as I though it would be. Here are my top 5 tips to help ease the experience with infusion treatments.

1. Ask questions and do your own research

You do not have to agree to the treatment plan blindly. Do your research online and ask others about their experiences. If you have any questions, please ensure you ask your doctor or your nurses. You can ask them how does the treatment help, are there any side effects to look out for, are there any risks involved, what about getting pregnant, or even the costs.

All of your questions and concerns are valid so be sure to bring it up during your appointment. If you have questions during the treatment or even after that’s alright too. Your care team is there to help guide you so don’t be shy to ask questions.

2. Bring someone with you during your appointment

Bring someone with you, especially at your first appointment. During the initial visit, they titrate the dose so they can observe and see if you had any adverse reactions to the infusions. So, this visit can last hours. Having someone there during the visit will help bring peace of mind and support while you are going through your treatment. I usually have my husband or parents with me. Having someone drive you home is also a plus.

3. Wear comfy clothes

Most infusions are a few hours long and hospitals are unusually cold especially in the summer. Most places will provide blankets, but I like to bring an oversized cardigan or fleece jacket to keep me even warmer. Infusions are done through an IV so you will need to wear a t-shirt for easy access to your veins. I’m also usually in leggings or sweats and in my favorite sneakers.

Comfort over fashion is key for me during infusion days. I want to be as comfortable as possible. So, I definitely would stray away from anything fancy.

4. Bring snacks and drinks

Most of the time you allowed to eat and drink while you are doing your infusions. I like to pack some water and snacks so I have something to drink and munch on. I usually pack chocolate or chips so it feels like a reward for doing these infusions. Having something yummy makes me look forward to completing these infusions.

5. Clear your schedule for the day

Infusion days are typically very draining on the body. Even though we are just lying down and even napping during these treatments it feels like we completed a marathon, especially the very first one. I typically schedule my infusions on Friday and take the day off so I can go back home and get more rest. I also then have all of the weekend to rest and recover.

Have you taken monoclonal antibodies to treat your lupus? What other tips and tricks do you have for infusion treatment days?