If you’re following my story you know that last week I headed into Philadelphia to have my first Stelara treatment. It took over two hours to get there from my house. I live in New Jersey so it’s not too far, but traffic is tough in that area. On top of normal traffic, there was a SEPTA (public transportation) strike.
I’m lucky that my husband brings me to my appointments. The drive is not easy. It requires a lot of fancy manuevering through city streets that I’m not really comfortable with. My husband is much better at navigating while I am terrible with directions.
Prior to me seeing this sub-specialist in Philadelphia, I saw a local gastroenterologist. My husband never came to those appointments. He took me and stayed with me for all of my colonoscopy and endoscopy procedures, of course. I think something about my illness was lost in translation prior to when he finally went with me to a regular appointment. He told me he realized while hearing me go over my history with my new doctor, that he didn’t understand just how bad things were — even though he saw me sick. So, even though he now has to take a whole day off work for my appointments, it’s been a good thing for both us.
At the last appointment, the doctor was so excited to tell me I was the first patient to ever get the treatment at that particular hospital. I felt a little like a rock star, if it’s possible to be a rock star in the world of IBD. I had to sign a form promising I wouldn’t sue the hospital – it listed all of the things that could go wrong by taking Stelara.
My doctor was proud to tell me he had to create the form himself, and that the top guy in the department had approved it. He kept reminding me that I had no choice, really, if I wanted to go into remission. I agree with him. My chances are small, but I’m determined to try.
We went down to the hospital cancer center for my infusion. A lovely nurse brought me back to a private infusion room. She was also very excited about the new treatment, asking lots of questions and talking about what she knew.
My husband brought me my favorite drink, a large cup of Diet Coke with ice, and the nurse brought me some pretzels. She inserted the IV into the crook of my arm (despite the fact that I have excellent veins, it really hurt) and got me all hooked up. She gave me a blanket and showed me the TV. All comfy, I discovered that my large leather chair actually was equipped with massage and heat. It felt great!
The infusion took exactly one hour and then I was on my way. Other than feeling a tiny bit off the next day, I didn’t have any reaction to the medication. In two months, I’m going to start injecting myself with Stelara (my husband will do it for me, actually).
People in the Stelara trials started feeling relief from symptoms as quickly as three weeks after the first infusion, but it was more like 14 for most people and could take up to 44 to achieve a full remission. I haven’t been feeling too badly since my infusion. I’ve been able to eat decently, and not needed Percocet.
Maybe it’s working. Only time will tell.
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