Entyvio Day One

I decided I wanted to blog about my experience with Entyvio.  I need to talk about my disease more.  I suffered so much this past year in silence, and that's not being a good advocate.

Today, I started on Entyvio.  It's a biologic medicine, so it actually changes your immune system to work towards lessening the inflammation in your body.  Humira, the drug I used to take,  is an Anti-TNF, meaning that it blocks the body's response to "tumor necrosis factor", which I believe is a type of protein.  Another common drug for those with crohns and colitis is Remicade, which is another Anti-TNF.  Entyvio works a littJle differently, by blocking lymphocyctes (white blood cells) from entering the gut by binding to the cell.  These medicines are complex, and whenever I research them, I'm always thankful I took that Human Biology class at Geneseo (shoutout to my roommate Liz for drawing pictures of the body systems with me while studying!)

Whereas Humira is self-administered, Entyvio is not.  I liked the convenience of being able to give myself a shot for the Humira.  Some people have trouble with giving themselves the shots.  Needles have never bothered me...I think as a result of my mother being a Type I Diabetic; I'd watched her give herself insulin shots and test her blood multiple times a day since I was born.  Entyvio is administered via an infusion at an infusion center.  The most convenient center for me is at Dent Tower, which is thankfully in the neighborhood where I grew up, less than a half mile from my parents house.  These things are important to consider when dealing with a chronic illness and not owning a car.  Luckily, I had my mom's car today, so I didn't have to worry about feeling sick on a bus after the infusion in case I had a bad reaction.

I was really nervous leading up to the infusion.  I drank about 100 ounces of water yesterday, since I'd read a lot of people say that being extra hydrated made it better.  I started to worry they wouldn't be able to find a vein.  Every time I get bloodwork or need an IV, everyone complains about my "rolly veins" and I end up with bruises and multiple stick sites.  What if they couldn't find a vein, and I couldn't get the drug?  What if I had a bad reaction?  What if I develop serious side effects?  Why did Humira work for more than two years and then suddenly give me drug-induced lupus?  What if something similar happens again?  How long would it take to work?  What if it doesn't work?  My colon has been acting up pretty badly, what if it takes a few months to work and I have to live like this for a while?  I barely slept last night.  I drank cup after cup of chamomile tea, trying to calm my nerves.  My hands started shaking to the point where I had to stop using my favorite mug because I was afraid I would drop it and it would break.

I got to the infusion center this morning, they quickly checked me in.  The nurses and staff there were all very nice.  The nurse who set up my IV told me that she'd had a lot of patients tolerate the drug very well, which helped to ease my troubled mind.  She took my temperature and blood pressure.  She was able to get a vein on the second try, on the inside of my forearm.  I had asked my friends for musical suggestions, and my friend suggested The Beatles, since it would be familiar and calming.  So with Ringo, John, Paul and George keeping me company, I got my infusion.  It takes about 40 minutes, they run the drug through the IV and then they flush it out with some fluids to make sure you get all of the medicine.

It's been about 8 hours and I feel alright so far.  I was pretty tired right after, but I think it was more from the stress and not sleeping, rather than from the drug.  I go back in two weeks for the second one.  The way Entyvio works with scheduling is first infusion, two weeks, four weeks and then every eight weeks after that.  I'll write more after my next infusion or update if anything changes between then and now.