When this column is published to the world on Friday, I will be busy having my next Crohn’s disease infusion of Entyvio (vedolizumab). Here and in future columns, I’ll discuss how I plan for my infusions, what I bring with me, and how I spend the next few days.
I am still searching for remission, so, I will have my next Entyvio infusion on Friday. Because I am scheduled for an infusion every eight weeks, I began to use a system and to think about what helps me. This will be my sixth Entyvio infusion, but my 10th infusion overall, after four rounds of Remicade (infliximab) infusions before trying this.
Entyvio is a biologic therapy that can help Crohn’s disease patients enter remission, improve the overall intestinal lining, and stop taking steroids like prednisone. According to the manufacturer, it is typically used when other medications haven’t worked for patients. Usually, my infusion can take anywhere from an hour and a half to two hours because I get premeds before the Entyvio itself.
Like any medication, Entyvio comes with risks of infections because of our weakened immune systems. Plus, our liver problems become a complication worry and serious allergic reactions are always a concern. Side effects are somewhat a given, at least for me. I always seem to suffer from nausea, headaches, and rashes, plus throat, back, joint, and general body pain. I get tired during my infusions, nauseated after (as always), and I just know that I will suffer from bowel bleeding for the following week. Why? I do not know.
While other infusions can take hours, Entyvio averages about 30 minutes, a significant time drop from my Remicade days. Like other biologics, Entyvio requires a loading dose (initial high dose before dropping to a lower dose) IV infusion to properly get into your system.
When receiving these types of medications, I try to bring a bag of items with me, much like my Crohn’s Disease Essentials and Emergency Kits.
For my infusion kit, I bring:
- Headphones and phone charger: A power outlet is located next to my infusion chair, so I usually turn my Pandora on and listen to music. I even blog and make sure to plug in my phone so I don’t lose a charge while I am there.
- Medications: I usually bring Phenergan (promethazine) for nausea, Benadryl, and Imitrex (sumatriptan) to prevent migraines, and the doctors usually give me Tylenol before we begin the IV.
- Blanket and Harry A*$hole: The infusion begins with a saline drip, so I freeze to death in the infusion lab. I do usually dress warm and comfortable, but I foresee still being cold, so the extra blanket comes in handy. I also bring a plush toy of a rectum from I Heart Guts, since I had two rectal surgeries due to my Crohn’s disease. It’s just something I bring to get a smile or laugh out of people. It helps bring me happiness, too. I know I get a good giggle every time I explain what it is and that I named him Harry A*$hole. Pardon my humor.
- Snacks: I make sure to bring candies, gum, coffee, or water with me because once the medication has begun in the IV, I am not allowed to roam around the hospital to the cafeteria or vending machines. Crackers and candies can help with nausea and coffee helps to keep me awake.
With Crohn’s medications, your doctors may suggest a different treatment plan from what I have tried and you may have different items that you like to bring with you to an infusion. I do not offer medical advice, I only share what I know from my personal experiences. Remember, my Crohn’s disease is individual for me, and what works for me might not necessarily work for you.
For me, It Could Be Worse.
Remember, Crohn’s disease and ulcerative colitis have no cure, and complications from them can worsen over time without remission.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.