Entyvio Infusion: Day 1

I just woke up from a nap. I am between naps right now. This is my third or fourth. They are lasting from forty minutes or so to an hour or more.

I had my first Entyvio infusion today. It was done at the hospital in a little side room in the Kansas City/Mid-America Gastro-Intestinal Consultants suite. Comfy reclining cushioned medical chairs lining three of four walls in the room and everyone was there for a gastro-intestinal related infusion.

When I arrived, there were two other people in chairs, with IV tubes/needles in their arms getting some medicine or another slow-dripped into them by a beeping machine located next to their beds (I forget what the nurse called those machines). The lady next to the door was covered with a beige hospital blanket and fast asleep . The young man in the farthest corner of the maybe 20 foot by 15 foot room was sitting straight up and working on his laptop. Every now and again he talked to someone through a hands-free Bluetooth headset in his right ear. The professional tone of his voice and his formal speech, along with a lack of warmth, made it seemed like he was doing business. I wish I had known I could bring a book or computer to my infusion. I will definitely do it next time.

I chose a chair almost exactly between the two of them and, after filling out a few pages of personal information and current symptoms and side effects, I was left to my own devices with an IV needle stuck sideways in my left arm -where it bends – and my cell phones (personal and work phones).

Entyvio (vedolizumab) is a prescription antibody medication used to treat moderate to severely active Crohn’s disease and ulcerative colitis when other medications have not worked well enough or cannot be tolerated. In my case, prednisone is working well enough, but I have not gone into remission, and it is dangerous to stay on it long-term.

Dozed off. Sorry.

With Crohn’s disease or ulcerative colitis, there is an increased amount of white blood cells in the GI tract – more than necessary – which leads to inflammation, ulcers (in the case of UC) and other symptoms of IBD (inflammatory bowel disease). Entyvio binds itself to some of the GI-directed white blood cells and prevents them from entering the GI tract, which lowers the number of white blood cells, and in turn reducing inflammation and the symptoms of Crohn’s disease and ulcerative colitis.

Because it keeps white blood cells out of the GI-tract, Entyvio also weakens the immune system, lowering its ability of fight off serious infections and other infections caused by bacteria, fungi, and viruses, including and especially the ones that spread throughout the body. A helpful YouTube video informs me that patients taking Entyvio and medications like it have even died from these infections.

So, mask wearing and hand washing have become even more important for me.

The nurse tells me I shouldn’t expect to see any signs that the drug is working (or not working) for two months. Various websites tell me I will be switched off Entyvio if it hasn’t improved my symptoms and current condition in 14 weeks. So we will see…

In the meantime, immediate side effects of an Entyvio infusion are –

Dozed off again. And I mean DOZED OFF AGAIN! It’s 7:50 pm now. I started this post at 4:30 pm or so.

The immediate side effects of Entyvio are, and I quote the Entyvio website here:

“…common cold, headache, joint pain, nausea, fever, infections of the nose and throat, tiredness, cough, bronchitis, flu, back pain, rash, itching, sinus infection, throat pain, and pain in extremities

Entyvio website

I was tired before I got off the hospital grounds. I took a small nap while I was getting the infusion and I thought I was just tired, as I usually am, because of my insomnia. But I had to sit down outside the hospital to get a little strength. then I was too tired to walk home like I planned, to get my daily step quota in. That’s when I knew it was the Entyvio infusion.

I have dozed on and off every since I got home and something about it is different from my usual fatigue. I can feel it. Sugar isn’t even working the way it has, to give me a little energy. It’s a new kind of tiredness, an undeniable one.

I wonder how it will affect me at work. Will I need to stay home a few days?

Will I be tired enough to get some sleep tonight?

I had to eat something and have no appetite for anything. I had applesauce, as much as I could stand, and some Hi-C fruit punch. I saw some at the dollar store and I couldn’t resist.