Community Forum

Hello, I am new to this forum so I apologize in advance if there are 100+ other posts just like this. I did a search and could't find much info. on it so here goes:

I am a 31-year-old female. I started experiencing GI symptoms in the 6th grade and was diagnosed with UC at age 14. By age 21, I was told I went from having UC to now my current diagnosis of Crohn's. I have been on and off a number of medications (Asacol, prednisone, imuran, pentessa and humira). I was on Humira for a about a year after me and my doctor realized it wasn't really working and I began experiencing full-blow GI symptoms again (my current flare). I can't really say Humira was ever truly working but I seemed okay for that year (it's hard to say if my Crohn's was just still under control for that time period since I was on prednisone just before starting the humira). Anyways, because there were a few possible side effects I was experiencing from the Humira (i.e., weakness and potential neurological side effects). My GI did't want me to try similar medications in that class of drugs like Remicade, therefore, he chose Entyvio. I just got my second transfusion of Entyvio. It's stressful because my insurance doesn't cover the costs completely and I have to pay the home nurse care company $265 per dose, which is really difficult for me since I just graduated from school and am currently on medical leave from work. 

I am wondering what your experience was like on Enytvio? How long it took to work for you?... if at all? side effects? or any other information that you think could be helpful to share. I'm hoping to see results ASAP because I can't afford to stay out of work much longer. But according to a recent google search, I read that it takes about 4-12 weeks to start working. This made me panic. I'm not sure I can handle being like this for much longer. It is so difficult! I would love to hear about your experiences on this medication wether they are positive or negative. Please share!

Reply posted for SocialButterfly.

Thank you so much for the information you provided; this article has helped me better understand the issue I'm having. io games foodle

Reply posted for SocialButterfly.

Hi there! I have UC and was diagnosed a year ago in April. I have been on entyvio for a year now. I personally noticed it working within a month. I have a severe form of UC so it took a while to work. I have been in remission for 7 months now so since April this year and I started in November of 2018. However, although this drug has helped me reach remission there have been a lot of side effects that have followed. For example, every infusion my stomach hurts, I lose my appetite, joint pain which has developed since starting this, MAJOR fatigue, I have had c diff 3 times, impetigo on my mouth 5 times, a cold every month, the flu (even with flu shot), nausea, migraines that last for days, conjunctivitis in both eyes, allergic reactions to random things, and diarrhea. This drug lowers your ability to fight anything off and im not a dirty person I vigorously wash my hands, I stay away from people, and I keep hand sanitizer on me at all times. Not to mention one of the biggest side effects are a brain disease. These all have been scary experiences to go through. I want off this drug and am going to start working with a holistic doctor to do so. Although this drug has helped me I believe it is best not to use long term. Immune systems are not something you want to mess with long term. I am 27 years old and I do not feel like this has given me that much better of a life since being sick. Sure the urgency, frequency, and blood is gone but now I deal with an entire new set of issues. Not to mention no one knows the long term effect this drug will have because it hasn't been on the market long enough. Every drug has long term effects and I do not want to stay on this long enough to find out or end up getting a brain disease that will kill me. I really hope this helps you guys :)

Reply posted for SocialButterfly.

I don't have any answers for you..but I am hoping you could update. I am to start Entyvio in a few weeks. i am wondering if you have had time to form an opinion?

Reply posted for SocialButterfly.

I was on Entyvio for over a year with a UC diagnosis, and it actually worked better than anything I'd had previously. No side effects. Just remission. Things started to change when my disease also morphed from UC to Crohn's and it started attacking a different section of my colon, so now I'm waiting on Stelara for approval. I still recommend it regardless. There's nothing to lose by trying, and there's at least some decent chance it can work for you.

Reply posted for SocialButterfly.

I had UC and nothing worked, except prednisone and I eventually had my colon removed.  Then I got Crohn’s  and  was on Remicade for several years but it didn’t help.  I started entyvio in November and as far as I am concerned it does nothing for me either.  At least the biologics didn’t have any negative effects. Thankfully my insurance covers it.  I go to my local hospitals for infusions and the entyvio takes half  the time the Remicade did.