My entyvio experience.

Shibby - Go to http://www.entyvio.com and look at Entyvio Connect. That is their patient assistance program and they have co-pay assistance that caps your out-of-pocket at $50. Call them and talk to them.

I would say I started feeling better wihin 3 weeks. I went in initially it was 0,2,4,8 weeks for injestions. I know everyone is different and responds different. I was nervous to take a med that still was in the clinical phase but I was out of options and had no other means to get the beast under control. But it really helped and I didn't have to have a cocktail of other meds with it.

Thank you!! My doctor and I are meeting with a rep on Wednesday. I hope this one works!!

I'm on Day 8 too :) No change for me.

Day 9 was definitely better than day 10. I would say I am still on an upward trend. Others have reported that the journey upward with this drug is not a straight line, and so far my experience has been similar.

Days 7-14 could be best be described as chaotic. Improvement one day, a little step back the next. Overall though, a slight improvement week two.

Hey,

I also have just be approved for Entyvio and get my first infusion next week. I have been on Tysabri for just over a year and the last couple of months it stopped working for me. I was always nervous about this med anyway due to the risks of brain infection. However I have moderate to severe Crohns but the worst of it is low in the rectum area. After having a CAT scan a few weeks ago my doctor pushed for Entyvio. I have to say I have an extremely open and direct relationship with my GI. No question is ever silly and his explanations are in layman's terms. I will keep up to date with any improvements.

been only going a few times a day this last week. I have tapered my Pred down to 30 from 40 and no problems so far. Not sure if its pred or entyvio. All signs off blood have gone away. I wanted to rush the prednisone taper but then I decided not to risk it and just be patient with all this.  I want this stuff to work so bad. 3rd dose is still 2 weeks away.

Yes this am I had a bad bout of blood and I only dropped from 35 mg to 30 mg of pred 3 days ago. Hope it was a fluke as I have been doing so well the last week with no blood at all and I was thinking the Entyvio was starting to work.

Although I have Crohns(originally diagnosed as UC) your daughter is very similar to me as far as the area of inflamation. Yes it does rule your life but we have hope that maybe this drug will stop that somewhat.

2Bbetter said...
My daughter starts entyvio next week. She was diagnosed with uc in 2008. She has been on every drug and nothing has worked. She is currently taking a small dose of prednisone and 6mp. Her inflamation is in the bottom area of the rectum. She is only twenty seven and uc rules her life. I am greatful for the posts on entyvio and will post her updates too.

Hi there all of you,

My name is Jeroen (31 years old) and i'm from the Netherlands. I've been diagnosed with ulcerative Colitis since 2009. Had all the drugs there are (prednison, remicade, humira) nothing worked. except humira did a lot for me (6 months then it was over). 3 Times in hospital with big flare ups. Now i've been on Entyvio (vedolizumab) since 24th of july. I'm in week 7 (had my third infusion last week). I was hoping that other people could tell me if it is working or not? How long did you wait to kick in?? I'm feeling better since week 3. My stools (frequencies are much better, I am going to the toilet for 3/4 times a day. 2 weeks ago i was 7 to 9 times. So that's my improvement. Im a little worried that there is still blood/mucus in almost every stool. And also diarrhea (not every time, but most of the times).

I wish you all the best and hope there a people how can give the answer. The doctors in the Netherlands don't know a lot about this drug so they are saying 'be patient and we have to wait'.

Thanks a lot!!!

Greetings,

Jeroen

Just had my 3rd dose today. Last couple of days have been ok with only a few BMs. Dropped pred to 20 mg Monday and no blood yet. Keeping my fingers crossed. Feeling really tired this afternoon but I had a hard time sleeping last night due to the pred so maybe that's it.

Usually in and out of the doctor's office in about an hour. I go right back to work and don't feel any different.