My Experience With Trying a Biologic for Ulcerative Colitis
Last updated: August 2021
"Let’s see if we can find a good vein."
This was the common greeting before a Remicade infusion. I dreaded hearing it. My veins seemed to shrink in response — as if hiding from the needle as it punctured the skin.
Inwardly, I scolded myself: "C’mon. Suck it up, girl!"
Nurses attempted to soothe, "Sit back and enjoy some relaxation time."
Turning to Remicade for my ulcerative colitis
Years ago, I turned to Remicade when I felt I had exhausted all other treatments for ulcerative colitis.
If you’re not familiar, Remicade is a prescription medication used to treat adults living with Crohn’s disease, different forms of arthritis, and UC. This medication belongs to a class of biologics known as tumor necrosis factor (TNF) alpha inhibitors. Put simply: this medicine administered through IV therapy helps reduce inflammation.
When the FDA approved it for UC and it was available in my home region, I told my then-gastroenterologist, "Sign me up!" That was sometime around 2009-2010.
I was so ready for the relief of a biologic
At this stage in my UC journey, I was spent — physically and emotionally.
I was tired of medications not alleviating my symptoms. It was difficult working as a public educator and combatting the constant running to the bathroom. More importantly, I felt distraught going on and off prednisone.
When Remicade became available for ulcerative colitis patients, I voluntarily hopped aboard this treatment train.
Remicade immediately helped my symptoms
In a nutshell, the benefit of using this medication came almost immediately.
My body responded quickly. Within hours, my ulcerative colitis symptoms improved. The constant diarrhea ceased, and I felt almost “normal.” Therefore, I initially applauded Remicade.
Then, the $500 bill arrived in the mail.
But it also hurt my wallet
As I received another treatment, I got hit with another $500 bill. Yes, my health insurance covered 80% of the costs, so I was thankful for that much. But in reality, I couldn’t afford $500 for every infusion.
The IV regimen follows at 0, 2, and 6 weeks. Then, a maintenance regimen of every 8 weeks afterward. In short, the bills began to pile up. That added to my anxiety, which my UC didn’t need.
The time commitment of infusions
In addition, the more I needed treatments, the longer they seemed to take at the hospital. At first, the sessions lasted about two hours. Then, it seemed the hospital pharmacy got slower and slower in delivering the medication to the IV therapy center.
My appointments quickly evolved to sitting in place for 3-4 hours. As a teacher, I’m used to being up and moving around. Sitting still for so long created its own sort of “hurt” on my body.
Not to mention, the longer I sat, the more I contemplated the costs.
Possible side effects
Finally, what caused me to quit Remicade came in reading the fine print — the possible side effects. Most importantly, the list of “sometimes fatal” cancers occurring from Remicade included lymphoma, skin cancer, and cervical cancer. Not to mention possible heart failure or liver and blood problems.
Why hadn’t I read the side effects first?
Because I wanted relief.
My ultimate decision about taking a biologic
For a couple of years, I took Remicade. And I found great relief. But the costs, time spent administering it, and the possible side effects eventually found me saying, "No more."
Now, this opinion is mine alone. Other individuals are quite happy with Remicade. (It holds an online rating of 6.8/10.) Please don’t think I’m an "expert" on this. I’m not. All I can do is share my own personal experience. Every patient is different.
Maybe you think differently. In my heart, I believed there was a better way than "sometimes fatal cancer."
Plus, my veins have never been happier.
Does living with IBD impact you financially?