Entyvio: Dose 1

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Dose 1: In April of this year I started seeing a new GI doctor. I found great doctor last year, but after a few billing mistakes, I learned he was actually out of my network, and I had to start the process over, which was a minor setback. However, this new doctor took the time to listen to my tales of failed medications and biologic treatments over the past decade and after recapping our discussion and planning my next colonoscopy, he mentioned there may be one other biologic treatment I could try that differed from the previous three I had failed.  Enter Entyvio.

My first round of Entyvio was not that bad, but I don’t really remember what I am comparing it to. I do know that I bounced back much faster when I was 18 years old than I did this most recent round at 27 years old. I was pleased to find out how much faster the treatment is administered compared to Remicade. It may differ for some of you, but my Entyvio treatment is about 1 – 1.5 hours compared to Remicade, which took about 2.5 to 3 hours (I think?, Mom, is that right?)

A few things I did notice:

  • Nausea → This happened immediately and intensely. Do you downplay how bad something was once you dissociate the feeling? I do, a lot. So I reread the texts with my mom during the treatment, and either I was being very dramatic or I really thought I was going to throw up right after. I did end up slightly losing my stomach on a road trip that following weekend, but that could have been due to a number of things, like travel, driving, not enough water, etc. I continued to be nauseated for the two weeks following. It was such a strange sensation to suddenly feel like you will inevitably throw up. I am just getting used to dealing with the Crohn’s urgency!
  • Headache →  Think migraines or when you wake up from a bad night of drinking with friends to say, what happened again? As you squint to make sure you are in your house, and your phone and keys are around. It was comparable to the headache I experienced in years prior on Remicade.
  • Fatigue →  I was just generally so, so tired. I just wanted to sit down and not have to get up again for a week. I really struggle with fatigue because the perception in my head is that I should have much more energy for my age and I have always worked out and been active, but I am finally accepting the fact that I have the energy level of what feels like a 95 year old some weeks. This feeling wasn’t as new as the others, but just felt like an added blow.
  • Depressed chest/cough →  So that isn’t a technical term and I made it up, but it’s my best description. It felt like a weight was set on my chest for the first two days. I found myself going for the inhaler to supplement my oxygen (it was prescribed for bronchitis, not this). It also felt like the bronchitis I had recently had the few weeks prior was coming back (but it didn’t).

 

My personal recommendation for those of you who are starting Entyvio would be to give yourself that day and the few days following to adjust. I had already committed to a family engagement that was a 10 hour drive away and it was a struggle. I contemplated not going, but was so excited to see everyone, I couldn’t back out. I was not only car sick the majority of the time, I was really tough to be around. Some food was fine, while other things made me feel sick. One bad bite or smell and I was fine to not eat the rest of the weekend. No amount of coffee gave me the energy I was used to. But, by about the 5th day, I felt back to my current state of normal. For everyone that was around me that weekend, hopefully this explains! The first few treatments are always tough, but I am remaining optimistic. 

 

 

 



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