On September 26th of 2016, less than a year ago, Stelara (Ustekinumab) was approved by the FDA for the treatment of Crohn’s Disease. To say I was ecstatic would have been an understatement… I remember reading the press releases and letting out a huge sigh of relief. I was so glad to know that IBD patients had ONE more option!
As excited as I am to see more treatment options become available, I still worry about exhausting the medications that are available to me. At this point, I have failed both Humira and Remicade. Though Entyvio may have kept my disease in remission, the ongoing side effects just weren’t worth the trouble, extra appointments to keep, and 4 additional medications I required.
At this point in time, Stelara is the right move. The question is, will it be a feasible one? Today we took the first step in finding out! My insurance company approved my use of the drug, but required that I have a home health nurse come to administer the medicine (little known fact, home nursing is typically cheaper than outpatient hospital infusions). I received an interesting care package yesterday… boxes full of medical supplies, an infusion pump, anaphylaxis kit, saline, and (3) 130 mg vials of Stelara. Today was the day. My nurse, Cindy, came to the house and we were ready to do my introductory infusion! Or so we thought we were…
Among the materials shipped to me, there was no IV kit, no alcohol pads, and a pump that was defective. Is now an appropriate time for the face-palm emoji?! Fortunately, my handy dandy and resourceful nurse had extra supplies on hand. Unfortunately, even the back up pump didn’t work correctly. We managed to make it work though (with lots of unnecessary beeping and warnings)!
Regardless of whether or not the afternoon went as planned, I was able to complete my infusion and (assuming all goes well) I will follow up with gastroenterology and begin subcutaneous injections in 8 weeks!
Are you currently on Stelara or another biologic? I’d love to hear about your experiences!