Starting a New Treatment: My Experience with Humira and Stelara

This article is by Jennifer Lee from the United States.

---

Here’s a picture of me before my treatment! A bit nervous, but hanging in there.

This past week, I received my very first dose of Stelara, my latest biologics treatment, at Mount Sinai in New York City! Unfortunately, even after a year on Humira subcutaneous injections, my Crohn’s symptoms have not subsided as we had originally hoped. After having seton drain placement done back in December 2020, along with another operation in June 2021, my healthcare team at Mount Sinai’s IBD Center decided that it may be best to try a new method of attack with a new set of biologics treatment.

Before starting the treatment, I had multiple healthcare workers stop by my room to explain what exactly Stelara was. I’m grateful that my mom was there to be by my side during this transition, but I also know what a blessing this is. When I was first diagnosed back in June 2020, I was completely alone in the hospital while COVID-19 infection and hospitalization rates were through the roof. The simple comfort of being surrounded by a loved one went a long way. 

Here’s me while receiving my first dose of Stelara intravenously! The next dose will be done via injection, hopefully on my college campus.

While I originally had a bit of trouble breathing in the first few minutes, my nurses assured me that this was not an allergic reaction to Stelara and that I was reacting well to the medication. It only took about an hour for the entire round of Stelara to be infused, but I did wait an additional 30 minutes to ensure that I would not experience any additional side effects. Truth be told, I was surprised at how efficient and fast-paced the entire infusion center at Mount Sinai was; I felt completely safe and well taken care of in their midst. Shoutout to the tireless effort of the amazing healthcare workers at Mount Sinai!

The day immediately after my first dosage of Stelara, my chronic fatigue kicked in, leaving me completely knocked out the morning after. Even after a year of living with Crohn’s disease, I’m still surprised by the ways that chronic fatigue manifests in my life. Although self-care admittedly goes a long way in understanding my body’s signals, I was most definitely caught off guard by how exhausted I was after the first dosage. 

Moving forward, it’s a bit terrifying knowing that my treatment plan may or may not work. However, I feel so grateful to have access to doctors that specialize in IBD care and surgery; all IBD patients deserve access to the most effective treatments for their specific condition. My first dose of Stelara was a reminder of not only how fortunate I was to have a second chance at a biologics treatment, but also of how much more work needs to be done to ensure that healthcare becomes equitable for all.

What to Expect at a Remicade Appointment

By Leah Clark

As someone that has been using remicade for the majority of their life with #IBD, I think it's safe to say that I've got infusion days down to a science. Check out this video to see what one can expect on infusion day with remicade and read more about it down below.

When I was first diagnosed with Crohn's disease at the age of 12, my pediatrician recommended that, along with several pills including Prednisone and Pentasa (mesalamine), I start remicade infusions right away. Besides a brief few months this past year without it, I have been taking remicade ever since then. Remicade has worked wonderfully for my IBD, so much in fact that for a few years, I was able to get infusions every 11-12 weeks, instead of the regular 8 weeks. That being said, it did take several years to reach that point with no flares during that time. Now, I understand that everyone's body is different and what works for one person with IBD may not necessarily work the same for another. It's importance to listen to your body and your doctor.

As someone that was only 12 when they received their first remicade treatment, I wish that I would have been more prepared and knew what to expect. I remember my first treatment literally lasted all day because of IV complications, reactions, and a lot of tears being shed. Now that I've been going for so long, I thought it would be great to allow someone else to have that information that I was lacking on my first visit. Whether it be your first time receiving a #remicade infusion, you are going along with someone to support them during their infusion, or you're an old pro at this point, it never hurts to see someone else's experience with remicade. In the video, I go through the whole process of my infusion day, including what to wear, what to expect for vitals, and the entire unedited viewing of getting and IV and starting the medicine infusion.

Hospital visits can be scary, especially when you don't know what to expect. I hope with this, you can feel more relaxed and prepared for your next remicade infusion.