On September 28, 2016 I started Entyvio infusions for my Crohn’s. You know what I’m going to quit calling it my Crohn’s. I didn’t ask for it, I didn’t buy it. I don’t want it.
So I thought I’d make a sort of diary of how things are going with Entyvio for the first 6 months since that is how long my doctor told me it would take before the medication would start working. I’ve decided I’m going to type all this out daily and edit it as I go. I’m not sure yet how often I will post updates on this so.
For those who don’t know what Entyvio is let me give you some information on it.
How can ENTYVIO help patients with CD?
ENTYVIO treats gastrointestinal (GI) inflammation that occurs in adults with moderately to severely active CD. If you have not experienced the results you are looking for from other treatments, including steroids, immunosuppressants, or biologic therapies, ENTYVIO may help you:
Relieve symptoms caused by flare-ups
Achieve remission—early remission is possible
Reduce or eliminate the need for steroids
Patients with CD taking ENTYVIO showed significant improvement in their disease:
Important Safety Information about ENTYVIO® (vedolizumab)
©2016 Takeda Pharmaceuticals U.S.A., Inc.
Ok so we know what it is now for my diary portion of this post.
Day One: I’m getting my infusions at the infusion clinic near by. Since it’s my first treatment the head nurse has to go over my records and prior blood test. Well along with my dads tiny veins that run not roll but actually run and hide, I now also have a high platelet count like he did. UGH. Thanks Daddy.
I don’t know about anyone else but the commercial I saw for Entyvio was wrong wrong wrong. The commercial said that the infusion would take 30 minutes and shows a woman walking down the street all happy and stuff. HA What it should have said was that after your infusion you will sit for 30 minutes and then go home. Total time there was 3 hours.
Day two: Well as far as side effects go I still have headaches. To be fair I was having headaches with Humira as well. Around 5 pm I had a wicked fever. It was 102. I contemplated telling my supervisor that I had to leave work early but my wallet had a heart to heart with me and I stayed at my desk in my office until it was time to clock out.
After a cool shower and wrapping my body in layers of blankets I was able to break the fever by morning.
Day three: Feeling slightly drained from the fever of last night and all. I decided to rest on the couch and rest until having to drag myself into the office to work.
Day four: All of a sudden I am full of energy and risking TMI I had a bowel movement this morning! For those with Crohns you know that there are terrible things but being constipated hurts like a….. well you fill in the blank. So back to having extra energy; I spent 5 hours cleaning every nook and cranny in my house.
Day five: Guess what?! Another bathroom moment for me! I might add that I haven’t had any pain the last 3 days! No pain gives me more focus. I’m able to work on my blog again! I haven’t posted anything in over a month. Honestly I was just in so much pain all I wanted to do most days was go from the bed to the couch and back to bed. Those with Crohns know exactly how this feels.
My appetite is picking up! I put a pork roast in the slow cooker this morning.
Day six: Still feeling good. I decided to pick up my walking again. Taking it a little slow today and only walked 1/2 mile. River was happy about that. Appetite still good. Still having bathroom moments. Those moments haven’t become fully formed yet but I’m not complaining. Still no pain.. I think this medication is working faster than anticipated. Tonight I’m going to start meditating again. I was ding it in the mornings, bp, (before pain). I want to see if meditating at night will help me sleep better.
Day seven: I walked an entire mile this morning! I hadn’t done that in over a month. I waling with River even if she gives up after a mile. I swear the dog has her own pedometer implanted inside her. Before getting so sick I wanted to do 2 miles. I’ll have to ditch the dog after the first mile and then go back for the second mile. Not today though. I’ll work up to that who knows maybe I can talk her into doing it with me.. LOL No pain!
Day nine: Ok wow nearly an entire week of no pain! I haven’t had any more fevers so far either.
So other than totally looking at my clocks wrong today and going into work an hour early, (oh no is this how the brain infection starts?? let me stop I’m just kidding I just simply had a pre-senior moment), I’m doing awesome.
I’m still taking steroids. I will be until my gastro doctor says I’m good enough to come off of them. Ugh I’ve been on them for 6 months now.
So after t