It has been awhile. According to my blog post, 16 days to be exact.
My motivation to do the million things I want to do is starting to dwindle down as I am down to 2.5 pills. But it’s Christmas season so I need the energy! This is the best time of the year! My most favourite time of the year!
But I have just finished my third round of Entyvio! Generally, I feel pretty good. In fact, a lot better than when I was on Humira! I have had a lot less side effects from the drug itself.
I usually go in, talk to the nurse or doctor to make sure I am healthy enough to do the infusion, get my vital checked, do the infusion for 30 minutes, get my vitals checked again, and then go on my merry way.
I sometimes get tired and a little sore from the injection site but by the next day I am usually a functioning human. In fact, this last round I was able to go to work the next morning with no problems!
It has been only three rounds so I can’t say a lot about it. It works pretty similarly to Humira though in regards to induction doses. You start with one IV and then two weeks later your second IV then a month later your third IV and then finally it goes on an 8 week cycle. However you can do it every 6 weeks or worse comes to worse every month. I’m hoping I make it to 8 weeks or at least 6. In addition to this, I have to fed ex my poop samples to the drug company as they are the ones who are doing all my testing. The IV clinic will also complete my blood work for me.
I know I am not anywhere near remission yet as I still have blood in my stool from time to time and it still really really hurts when I have my poop attacks. But my poops are solid, I am only going a max 3-4 times, and my energy levels have been somewhat stable. I am more gasy lately, but I think this has more to do with prednisone than Entyvio. I know for sure my hair loss AGAIN has everything to do with prednisone and my chubby cheeks.
I’m really hoping this is our answer. Methotrexate is still not off the table. In December I have a follow up to examine my progress and decide my route to hopefully remission. But we have come a long way since this summer and I hope this just continues.
Also if you haven’t had a chance to read this books and you suffer from ulcerative colitis, I highly recommend it. It is informative and absolutely hilarious. Seriously. Read it.
And don’t forget it is awareness month for U.C! I am participating in a walk this Friday to help raise awareness and encourage everyone to do their part!
2 thoughts on “My Experience on Entyvio”
Good morning Bee, Your story completely matches my UC experience on Entyvio! Just when you are celebrating less urgency, formed poop, the bleeding creeps in on and off. So frustrating! I’m curious do you suffer from back pain before these episodes? I do and it’s excruciating. I will definitely order the book you mention, the small bit you hated had me laughing out loud. Take care and keep well! Kathy
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Oh it’s super frustrating ! Such a roller coaster ! But yes I definitely get terrible back pain. I have even pulled my back or had it completely spasm while I’m reaching for the toilet paper ! So I ended up laughing and crying in pain because I just wanted to give up. Crying while I’m pooping and then once I finally get over the attack and am ready to go my body refuses to cooperate and of all things I injure myself reaching for toilet paper ! But the book is worth the read ! 🙂 best of luck in your own journey !