My Experience with Vedolizumab/Entyvio

So for those of you who have read my previous posts or follow my Instagram. I had a permanent ileostomy formed in 11/16 to help with my short bowel syndrome and ongoing symptoms. I’ve had ongoing problems with my Crohns and it is resistant to every single medication they’ve tried or I build up allergies to the Immuno Suppressants they have put me on. Infliximab, I’m severely allergic to & the Humira, I’ve built antibodies to it. My experience with Vedolizumab/Entyvio.

What is Vedolizumab/Entyvio

Entyvio is a biological treatment for adult patients with moderately to severely active Crohns & Colitis which is given via an infusion through a drip in your arm.

Vedolizumab/Entyvio welcome pack

Vedolizumab/Entyvio welcome pack

A biologic treatment is produced from living organisms rather than a chemical process and is designed to affect proteins in the body that are involved in causing inflammation. Entyvio is currently the only approved biologic treatment approved in the UK that selectively treats the type of gut inflammation caused by Crohns and Colitis.

Treatment day

So my first treatment of Vedolizumab was on the 24/03/17 at 9:30 am at the infusion suite at Guy’s hospital. I was greeted by my nurse specialist Gemma, who’s a rather nice lady. She sat me down and explained the process and how the infusion was going to be administered.

Whilst Gemma went and made up the infusion which takes half an hour to mix and settle, I got attacked by a registrar from St Thomas’s hospital as they wish to take samples of my blood. The samples are for them to test with other samples nationally so they can pinpoint how the treatment works for some patients and not others. I signed my life away again and decided to take part in another medical mystery test.

Timeline

  • 9:30 am – Nurse placed cannula on the inside of my right arm. They always use your dominant side
  • 10:00 am – Nurse hooked me up to the infusion drip and machine that has a timer on it to alert them for when the infusion has finished
  • As the infusion was going in I felt slightly light headed and my brain went fuzzy for a good half hour. This is just me and everyone is unique to how they react to the infusions, so I switched off for a good 45 minutes
  • 10:30 am – Infusion has finished and they attach me to a saline drip for 15 minutes to just make sure the infusion is pushed and flushed into your blood stream
    IV, cannula and drip stand

    IV, cannula and drip stand

  • 10:45 am – They remove the IV and keep the cannula in and you have to stay for 2 hours after the infusion to make sure you don’t have a delayed reaction to the Vedolizumab
  • I sat and read for the 2 hours along with the constant beeping of my messenger due to ongoing projects I have in the pipeline. Thank you for keeping me entertained ladies you know who you are.
  • 12:00 pm – They check my obs, remove the cannula and release me back into the wild

They also gave me a rather crushed tin which is a starter kit for the treatment. This starter kit contains a journal where you can write down your treatment dates along with any medications or thoughts you may have. It also contains a free post envelope and an informed consent form where you can sign up to their gateway and personal coach. I myself won’t use this but others may like the support.

I leave Guy’s hospital and head to London Bridge train station and hunt for food as I’m starving, grab a chicken noodle soup that’s free from everything and jump on the next train home. Finally get home for 2 pm. I make a cup of tea and then head to bed as the infusions always take it out of me for 24-48 hrs after the initial infusion.

After the infusion

So 24 hours after the initial infusion, I will admit to feeling a bit ropey with some muscle pain and sore joints on my right side. The pain isn’t too dissimilar to muscle aches after exercise. I also have the sniffles and my flat is like the Bahamas.  This could just be completely coincidental but I believe it’s linked to my infusion. So I crawl into bed, get rubbed down Volterol as I’m reluctant to take painkillers and fall to sleep pretty quickly.

Sunday morning, I’m up at 8.00 am and I still ache but have signed myself up for cooking for 12 people and I can’t let the side down. My brother had to pick me up as I got stuck on the kitchen floor. I always struggle due to lack of stomach muscles and dodgy hips. I get through the day and crawl into bed and sleep for 9 hrs with two bathroom visits during the early morning but wake up feeling refreshed Monday morning.

Disclaimer: Everyone is different and you may not experience what I have after the infusions. This is purely informative and a progression of my personal experience.

Routine for the next set of infusions

  • 07/04 – Two weeks after the initial start up dose
  • 19/05 – six weeks after the last one
  • 14/07 – Eight weeks for each infusion thereafter

 

The starter kit

The starter kitIf my Crohns shows no response to this after 14 weeks then they will discontinue the treatment. However, if it does work then my Crohns will finally be in remission after 5 years of constant flares. So please keep your fingers and toes crossed for me as you follow me on my journey of let’s see if this works.

Please feel free to pop a comment in the box if you are on Vedolizumab or are about to start this drug as I would like to know your experiences.

 

10 Comments
  1. I hope you reach remission! sending love and hugs xx

    • I’m hoping so too, its been 5 years in flare mode, Love and hugs are greatly appreciated.xx

  2. Let me know how your next infusions go. I’m
    Starting on Vedolizumab at the beginning of May. A bit nervous and hopeful at the same time. Xx 😊

    L

    • I can Understand the hopeful but nervous. Fingers crossed it helps with your symptoms.I start my second infusion tomorrow so will keep you updated Xx

      • Hope it goes okay tomorrow Louise. Let me know and keep me posted please. You’re welcome to drop me an email. Take care for tomorrow. xx

  3. Hi Louise

    Your “About Me” made me cry. I’m 36 and was just diagnosed in December 2015. They’ve current went with IBD as both crohn’s and colitis was in my original biopsies and they don’t want to say one of the other just yet.Pancolitis, right side is worst. Azathioprine made my liver toxic for 6 weeks and whenever I come of steroids I begin to flare slightly so like I mentioned they’re about to try me on the vedolizumab starting May. But I’m certainly mild compared to everything you’ve been through.

    • Awwww, bless you.Sorry I didn’t mean to make you cry. They are hesitant to give a full diagnosis sometimes and just cover the whole spectrum. The illness does affect other things such as the pancreas and gall bladder but they always keep a close eye on you to make sure everything is under control. Steroids are ok for the initial flare but aren’t great long term. Everyone is different with the flares and illness and its unique to the person and the disease. Hoping you find the relief needed with the start up from Vedolizumab. Thank you ever so much for your donation to the C&C Walk, the funding will hopefully fund them finding a cure for this blasted disease xxx

  4. You’re welcome Louise. I hope vedolizumab no2 has went ok for you today. I’ll keep you posted with my journey into biologicals.

    take care

    Elaine

  5. Hi Louise

    First Vediolizumab infusion next Tuesday, nervous but just hoping this works for me. Will let you know.

    Take care

    Elaine

    • Hi, ELaine. Yes please do keep me updated fingers crossed for you.Make sure you take a good book with some snacks and drinks as you could be there for up to 3 hours for the first infusion. I have my third infusion next Friday
      Louise xx

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