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Entyvio


Thu, October 17, 2019 11:31 PM

HelloI was diagnosed with ulcerative colitis on April of 2018. I have been on enemas, steroids, balsalazide, sulfasalazide, and now entyvio. I am not here by any means to tell anyone what to do but I wanted to share my experience with this drug. I started entyvio last November so 2018. I did not respond to any of the medications my doctor prescribed my doctor said I have a more severe form of ulcerative colitis. Anyway, shortly after starting this drug I had immediate side effects such as migraines, nausea, stomach pain, and severe hand tingling. These side effects last for a week and a half sometimes two. Then I started getting weird skin infections over the months that followed. Entyvio does lower your immune system so as the months progress so do my issues. I ended up catching c diff 3 times I have gotten impetigo on my mouth 5 times, every other month I get a cold, I have gotten the flu once even though I have had a flu shot. I am not a dirty person I am a legit germ freak I wash my hands so much throughout the day. I have managed to not catch anything lately (knock on wood) since using hand sanitizer. Recently over the past few month my side effects seem to be worsening this last time my neck, hands and feet were tingling for an entire day. I have discussed these symptoms and stressed my concerns with my doctor and she is refusing to take me off the meds. Instead she prescribes me MORE meds instead! Super frustrating I have never taken medication in my life until last year. I am now going to see a naturopathic doctor and see if I can heal myself naturally without meds. I believe medication has a time and place but I refuse to be on this drug for the next 5 years after what I have experienced. I would not recommend doing infusions unless you have to. Dont let your doctors tell you its your only choice because it is not. We have a say as to what happens to our body. There are NO studies on long term effects with this drug and I refuse to be a guinea pig and find out what will happen if I remain on this drug long term. Again medications serve a purpose they have a time and place. I just dont feel like this is our only option. My quality of life has severely gone down since taking this drug the lack of energy, infections, side effects, & long term effects are not worth it im only 27 I shouldn't be feeling this way. Thanks!

FPO Bohonerd
Joined Oct 17, 2019

Sun, October 20, 2019 2:20 AM

Reply posted for KMMartinez.

That is horrifying to hear...I am so sorry your daughter is going through this. It is a horrible thing for an adult to go through let alone a child. I REALLY hope she does not get the side effects I have. I am on day 7 of a migraine. I received my infusion on October 3rd and still feeling the side effects. It scares me for a child to be on this drug.....unfortunately if she isn't responding to any other treatments it may be her only option for now. Im a year in and it started clearing everything up in a month. By 5 months I was in remission not deep remission but remission. I meet with a naturopathic doctor on Thursday I am hopeful this diet change will help. I think this could definitely be a route she can take in the future as well.....this drug scares me because there are a lot of side effects and not to mention there is a deadly brain disease side effect as well that I know many fear but dont talk about. I also fear the long term effects because the drug has not been on the market long enough to see any. I hope she gets better though. I am so sorry :( im sure it is so rough for her and hard for you to see her suffer like this. It will get better I promise she just needs the right treatment plan.

FPO Bohonerd
Joined Oct 17, 2019

Sat, October 19, 2019 9:06 PM

Reply posted for Bohonerd.

My daughter is 3 and will be starting her treatment with Entyvio this next week. I have expressed so many concerns to her GI about this but Remicade did not help her and now she is on Mesalamine too. She actually just started having blood in her stool again so now Prednisone agan. I can not find hardly any information in regards to pediatric use of this medication. I read about all the side effects and my stomach just dropped reading what you had to go through! I pray my daughter does not experiance anything but I am so worried about this. Since her diagnosis in July her UC has not been managed. 

FPO KMMartinez
Joined Oct 20, 2019

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