Any Entyvio updates? I'm not doing so hot.

I just had my second infusion yesterday. I am doing slightly better (decreased frequency), but it really is too soon to tell. Hard to tell since I had been on LDN (just took my last dose last week, and while it didn't do enough to warrant staying on it, it had been helping). I'm also on Uceris (every third day, I had stepped-down from every other day about 10 days ago).

Everything I've read has said that 14 weeks is the cut-off for deciding whether or not Entyvio is working, so I'm trying not to make any judgments until then.

(FYI, I have Crohn's, but am following the Entyvio posts everywhere - Entyvio showed better data for UC sufferers, though my gastro and I revisit the "Crohn's or UC?" question every few years, as my disease is almost entirely confined to the colon (just have 4-6 inches of terminal ileum involvement) and I've never had granulomas or the like (but have had skip lesions and a stricture, so we go with Crohn's)).

I am sorry that we haven't seen more intensely great results :( I am hoping we start seeing some or that some of you improve to 100% quickly.

Please keep the updates coming.

I just wanted to post for those with Crohn's to let you all know how Entyvio is working for me. I have severe Crohn's and haven't posted much in here but did post after my infusion that was a week and one day ago. Entyvio is my last hope and I am also tapering prednisone (currently at 20 mg).

I feel like a new person at this point. I went to Mayo Clinic three weeks ago and my Dr suggested Entyvio because I have had some bad reactions to the Remicade, humira and Cimzia. Before I went to Mayo, I was using the restroom about 22 times per day. I am happy to say that I am now down to about five or six. Some days have only been three. I know it hasn't been long and I am trying to not get too excited but can't really help it. With five kids and school starting and the stress that our increase in schedules usually brings, I am actually amazed that I am feeling this good and can only hope that it is the Entyvio.

I am having lots of mood swings and am very irritable but am hoping it is just the prednisone taper. I am a worrier, naturally so I do still worry about the possible side effects or that they're going to find something bad out about Entyvio.....but I am trying to turn those thoughts in a positive direction, everytime they creep into my mind.

My Dr at Mayo said they feel Entyvio is much safer than even Remicade, which worked like a miracle for me until my third and final infusion.

I hope this gives someone hope :0).

Amy

Some of us are still here and don't want to post negatives, just because it didn't work for us, I don't want others to give up. This disease (or set of diseases), is so individual. I don't wasn't to establish a negative mindset for a new effective drug. Some happy folks out there 'living life' is a theory, but veterans here on their last drug are keenly aware. Most on Entyvio have failed biologics. We should be, and are sharing data. I am so very happy if others are helped by this. I really want it to work.

Anyone else have updates? I have my 3rd infusion tomorrow (which puts me almost at week 6). I am back to pooping blood and mucous day and night. Super exciting….

I plan to quiz the infusion nurse and other patients in the infusion room tomorrow on progress!

I am hopeful that this is the Entyvio that is making me feel good. I did want to say that I was also put on Immuran for the first time ever, when I went to Mayo so Indont know how possible it could be that the Immuran is what is helping me or if it could also be the Immuran and Entyvio combo. Just wanted to mention that so that everyone who is considering Entyvio or on it, won't lose hope because I didn't provide all the necessary info . I wish everyone here luck! I have had many surgeries and just don't have much bowel left so I am praying this is the answer for me and for any of you who need it to be your answer as well :0)!

Amy

Thank you so much :0)! Don't know why my doctors here never put me on immuran.....but my Dr at Mayo was actually thrilled to be able to put me on it :).

Pink - I hope you go into remission with Entyvio!! Keeping my fingers crossed for you!

Did my 3rd dose last week. I am down to 15 mg on Pred. Still having some symptoms though(light blood and urgency). Still I am able to go to work and function for the most part.  I am only going to the bathroom 3 or 4 times a day sometimes less. Mostly solid but not really well formed. I am still hopeful though since I have heard it can take months to really start working.

3rd infusion down. Again super quick and easy.

I spoke to the infusion nurse, the office research nurse and a guy that was in the original Entyvio drug trial. They have 12 people in their office currently on Entyvio. 3 people have finished the 3rd loading dose. No one is reporting miraculous turnarounds yet. I am the most symptomatic of the 12 on Entyvio (do I win a prize??).

The guy from the drug trial was very positive. He was in the original group before it was even called Vedilizumab. He has Crohns not UC. He said it took a good few months to see any improvement. We went through some of the logistics and mechanisms of how Entyvio works. So it makes sense it will not work as quickly as say Humira or Remicade. I want to say he has been on it for 4 years.

The nurse is going to tell my doctor (he was in procedures so I couldn't talk to him today) about how bad my symptoms are right now. I'm not sure what he will say. Probably to come in for an office visit.

Sloth….I had the horrible fatigue after infusion 2. It took me a good 4 days to get back to a 'normal' energy level. I feel more mentally prepared for it this time.

So I'm done for 8 weeks! Fingers and toes crossed. I could use some relief.

I had my 3rd infusion a little over a month ago...I'm doing much much better than before but not in remission. Big thing is I've been off of steroids for about two months now and I'm leaving the house a lot....and I usually sleep through the night or I wake up once....I used to have to get up 4 times a night.

My BMs are usually sort of formed now (until entyvio I haven't had a formed looking bm in 2 years)...however I do have bad days still....earlier this week I had to go almost 20 times some reason....normally I'm down in the 4-8 area which is much better than where I was before starting (even while on pred).

I think florastor might be contributing to me doing better....when I was on vacation I stopped the probiotics completely and by the end of the week things started going down hill (ended I'm that 20 BMs day)...started florastor again and I'm doing better again, so who knows.

I still go multiple times a day just to release some mucus, but overall I'm much better, less frequency and urgency. I contribute most of my urgency to gas I think.

I have had 6 or 7 doses so far. I am still just maintaining. Still have a stubborn area by my rectum that won't heal up. Still going 6 times a day with blood often. I am doing hydrocort suppositories 2 times per day to try to fix that. I am not in remission at all but it's been 6 months since I missed any work so I'll take it.

I made a mistake in the last 2 lines of my post !
Should say my GI Doc doing a flex sig this week
I am using an I- pad