Entyvio Infusion # 1

Chronically Inspired During EntyvioI thought the day would never come (6 weeks felt more like 6 months), but I had my first Entyvio infusion on last Thursday afternoon! It was a hassle free process, quick infusion, and I went straight back to the office after my appointment.

On top of waiting for prior authorization from my insurance company, I also had to wait for Lutheran to establish a relationship with a distributor and order the drug. I had a feeling that I was the first Entyvio patient at this particular facility, but my nurse confirmed that suspicion upon arrival.

In the past, all of my infusions have been at Lutheran Hospital’s outpatient clinic. Given the time constraints, my gastroenterology nurse chose to set this up in house at Lutheran Medical Group instead. The LMG infusion room is a small and quiet area staffed by two nurses. This is quite different than my experience at the outpatient clinic over the last two years. I’m normally one of 10-15 other patients on a floor staffed with 3-5 nurses and a volunteer who ever so kindly takes lunch orders for the cafeteria, passes around the snack basket, and will bring you a nice cold drink (I never could get him to bring me a beer).

The outpatient clinic isn’t exactly my number one choice for a Friday afternoon hangout, but if I’m going to have to park it somewhere for 3 hours… it’s not a bad place to be. It’s nice to see familiar and friendly faces, especially when you aren’t always comfortable or feeling well. Needless to say, I was quite hesitant about getting my infusions done somewhere else. But you know what? These Entyvio infusions are fast, the infusion room isn’t so bad, and my new nurse is awesome!

The Pros:

  • 30 minute infusion time
  • No Remicade hangover

The Cons:

  • I’m only on Entyvio because I failed yet another drug
  • Side effects I have experienced include joint pain and nausea
  • This is a newer drug, so there isn’t as much long term data available as other drugs

Long story short? There was a woman in the infusion room for Remicade when I arrived.  When I left, she was still there. Though Remicade may take time, I would gladly still be on it if I hadn’t had a reaction to it. I was always exhausted and achy after Remicade and now it looks like I’ve traded in the exhaustion for nausea.

Entyvio is an integrin receptor antagonist and is different from anti-TNFs that I took in the past (Humira and Remicade). It inhibits the ability of white blood cells to adhere to blood vessels in the gastrointestinal tract which prevents inflammation.

Every drug is different, every patient is different, and every patient is affected by each drug differently. There is no one size fits all treatment plan when it comes to Crohn’s Disease. The best we can do is share our experiences, help others navigate their own health journey, do our research, and support each other along the way.

I go back for loading dose # 2 on July 2nd… I’ll make sure to give an update then!


6 Comments on Entyvio Infusion # 1

  1. Jennifer
    June 25, 2015 at 3:27 pm (3 years ago)

    Good luck…hope this works for you !!!

    • Mallory
      June 25, 2015 at 3:35 pm (3 years ago)

      Thanks Jennifer!

  2. Lorna Secunda
    June 26, 2015 at 8:26 am (3 years ago)

    good luck Mallory…….you inspire me!

    • Mallory
      June 26, 2015 at 8:39 am (3 years ago)

      Thanks Lorna! Are you still over at PNC?

  3. Chris Gates
    March 9, 2016 at 8:10 am (2 years ago)

    How many entyvio infusions did you have so far? Has the joint pain gotten worse or better and what do you take for relief? My daughter had two loading doses and scheduled for March 22 for 3rd infusion. She has joint pain, back pain, stomach pains and very tired but can’t sleep well at night. Not sure if she should stick it out because it will get better or worse.

    • Mallory
      March 16, 2016 at 12:13 pm (2 years ago)

      Hi Chris! I apologize for not responding sooner! I’ve been on a bit of a hiatus and haven’t been paying enough attention to the site. I have now had 6 infusions and will have my 7th on Friday. Personally, the joint pain has gotten worse. In my case, I believe it is not so much of a side effect as it is existing arthritis that may have been under control with Remicade. After further investigation, an MRI I just had shows signs of and damage from arthritis in my hips. At this time, my GI and internist have agreed that a low dose of Meloxicam can be used. Though it is an NSAID, it is easier on the gut than ibuprofen. I’m still testing the waters on that and plan to back off of it the very instant I have any gut-related issues. I am also starting steroid injection on Monday. I sure do hope your daughter gets some much needed relief!

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