I'm currently on week 10 of Entyvio. I have had great improvements regarding symptoms but have also experienced some uncomfortable side effects. Overall I am very pleased. I was skeptical of the medication at first (mainly because the studies seem to imply that the drug is responsive for people with UC and drastically less so with CD people) and in desperation, I decided to try Entyvio. I am very happy that I did so. Please feel free to message me if you have specific questions and I'll try to answer them.

Hi PouchPower,
Glad to hear you are having good results with Entyvio. I am bit nervous as I have just been approved for Entyvio. I had terrible side effects with Remicade. Humira stopped working. You mentioned you are having uncomfortable side effects. I realize everyone responds differently but have you found your side effects disabling and have they improved over time? I work full time and don't want to miss more work for a drug reaction problem. Any suggestions would be greatly appreciated.

Well, guys, I'm on week 8 now of Entyvio. Initially, I did well. Arthritis calmed down and pyoderma gangrenosum/erythema nodosum chilled out. But around week 5, I started to get pretty sick and developed another fistula by week 6. I'm going to give it the full 12 weeks but as promising as the studies are for Entyvio, I'm not sure how well it works for j-pouches. Am hoping for a miracle at this point!

Sorry I haven't provided any updates lately. I’ve been on Entyvio for a while (about 5 months). After the loading doses, the medication is administered every 8 weeks. The first few days after the infusion, I have flu like symptoms. Then, there is a progressively lessening of digestive symptoms for about 2 weeks, there is a day or two of awesome days, then for another 2 weeks there is a gradual return of symptoms. Then I have to wait for a month for the next infusion. My biggest delight is that for the first month after the infusion (barring the two days’ worth of flu symptoms) I have a ton of energy! Normally I am sluggish and tired, and little activities require a nap afterwards. Entyvio gives me a month of superhuman stamina and energy. And, I am confident that I’m absorbing food and medications better during this month. For about two weeks, I do not worry about what I eat—no puréeing, no bland food, etc. During this time period I have not experienced any blockages. My hope is that the medication effect will last longer the more months I infuse.

Some of the negative things that I’ve noticed since starting Entyvio (not sure if they are side effects of the medication or side effects of being sick) multiple lung infections, sinus infections, one tooth abscess, rectal abscesses, and hair loss.

As for co-occurring diseases, Entyvio has zero effect for me. My Psoriasis, Psoriatic Arthritis, and Spondylitis are flaring up because I had to stop the other biologics that were effectively targeting these issues (but not doing squat for the Crohn’s and Pouchitis).

Hopefully I didn't confuse anyone with all of the time frames--just wanted to be as detailed as I could. I’ll make an effort to check-in every now and again. Please feel free to private message me! Good luck to all!

Hi Pouch Power,
I'm getting ready for my third infusion of Entyvio in two weeks, then I go to every 8 weeks. No improvement in gut symptoms and, in fact, I had to restart prednisone. Right after the infusion, for a few days I am tired but otherwise, nothing too troubling. I have my fingers crossed that it will kick in soon. Doing prednisone for the next 6 weeks then will start to taper per my GI. Also, I am going out of the country in mid December for a few weeks and I really don't want to be sick in South America. So, hoping prednisone will cover me for that trip.
I hope you start to feel well soon ALL OF THE TIME. Thank you for the progress update.

I am 7 days out of having my pouch excised. I tried Entyvio and other biologics to save my pouch but it kept fistulizing. Feel free to PM me if you have questions about Entyvio.

I am awaiting approval to start Entyvio, as I have cuffitus and anusitis that won't respond to anything else. Tried Canasa, cortifoam, Entocort, and am currently on 40 mg prednisone. Humira never worked for my UC and Remicase stopped working after 3.5 years. Also, suspicious spot inside anus- surgeon thinks may indicate Chrohns though GI not convinced. Called it ulcer. My GI is not optimistic about Entyvio working but has no other tricks. He did say that it takes full 8-12 weeks to work, so maybe there is still hope for you! My team thinks temporary ileo good option to let cuff and anus heal without output, but I'm not sure I want to do that,as extra surgery is extra risk, and I had so many blockages with loop ileo that I was on a TPN for 7 weeks. Hope something has worked for you, and any input on my situation would be appreciated. Waiting til mid January to make decision on temporary loop ileo. Laueie

I am going off of Entyvio. There has been a progressively worsening of Crohn's symptoms and I have been experiencing other negative inflammatory issues (including a new fistula). Good luck to everyone!

 

i began Entyvio in January with typical loading dose, followed by second dose 2 weeks later, then 4 weeks, and have now had 4 additional doses 8 weeks apart. I felt like I was doing better but I was on prednisone throughout. Now that I am tapering off prednisone, I am struggling with increased frequency and have had some accidents, mostly at night while sleeping. More in last 2 weeks than ever in this process. For me also, this is last ditch effort to avoid return to ostomy bag, which I abhor!  I am curious to side effefts others have had. I do not notice much difference immediately after, or midway between doses. I have not ever noticed gobs of energy following infusion. I did have significant hair loss in July, and when my dermatologist and other doctors asked me what happened 6-7 months previous, Entyvio seemed to be the only thing. My hair is growing back but I lost almost half of it, mostly on one side. I've had numerous other health issues since January, but not sure if they can be attributed to Entyvio. I did have lesion in anus that made my doctors suspect Chrohns disease but that is now gone. In addition to Entyvio 

I use Cortifoam for inflammation and bleeding from Cuffits. I am worried about Cortifoam, as someone just said their Dr. does not recommend it because it can thin the tissue down there and cause incontinence. Has anyone else heard that or experienced it? That's the last thing I need! Curious as to how many others have noticed hair loss and any other side effects! Thanks much! Laurie 

used entyvio for pouchitis control, which helped along with strict diet of no refined sugar, and lowFODMAP foods.  after a year it simply wasn't effective and i needed to resume antibiotics.  bummer.  i'll have k pouch surgery in nov as 15 years of the j not working is simply too much.  am refactory to most of the antibiotics.

 

i have very thin perianal skin, which results in intense stinging from certain foods--hot spices, garlic/onions, and other such foods.  often i would get up at 3 am and sit in the bath tub or apply both hot and cold compresses.  ugh.  i think the thin skin resulted from either/or all: prednisone, cortifoam, cortisone/lidocaine ointment applied into the anal canal.  talked to docs before hand about the side effects and the docs all blew those warnings off.  now i have the problem.  so be very careful as to how much you use of these powerful drugs!!

 

one drug without side effects is canasa suppositories, which is very effect for cuffitis.  i'd try that before any of the others.  it also helped with pouchitis.  use up to 3 a day, each 1 g.

 

so sorry to hear about your hair falling out.  bizarre.  i have tingling in hands and feet, sometimes like an electrical current going through them.  not sure what the half-life of entivio is.  anybody know that?  jlh

Interesting... I have just been reading about how cortifoam contributes to thinning of perianal skin, and possible effect on continence. Never heard about that as side effect from prescribing doctor. Would have been good to know though I may have used it anyway as I was having so much bleeding from cuffitis. Tried Canasa to no avail before Cortifoam and it didn't work. Later once things had improved, I tried again and it seemed to help with maintainance. I do hope others have better results with Entyvio than I am, as it seems to have less side effects long term than other medications. 

 

It it sure is hard to keep up with all these treatments and their side effects as we try to reach some normalcy in our lives. I do appreciate all who contribute to this site as our situations are so different and unique! Cheers! 

Am waiting approval to start this for pouchitis. I'm currently diverted as well ano still have damned pouchitis. Pretty sick. I guess this is my last ditch effort as well. Kidda scared as I don't do well on meds but I'm desperate and want my pouch and life  back. Really afraid of removal surgery so that tipped the scale for trying it. I met a girl in the infusion room today while getting iron and she has UC, been on it over a year and is doing great And she was very sick. Praying for you all and myself that this will work for us.

I've been having hair loss with Entyvio as well. But what's so weird is I was on IVIG and also noticed hair loss when I started the IVIG. With the Entyvio, my face has been breaking out a lot. I talked to my doctor about it and she told me that I have been receiving a large dose of solucortef (cortisol based steroids) before each infusion. When I was on IVIG, I was only on 50 mg of solucortef before each infusion. Now, on Entyvio, I am on 100 mg of solucortef before each infusion. She said this is probably what is contributing to the acne and hair loss. She said after 4 months of being on the Entyvio, she will lower the solucortef dose to 50 mg before each infusion. Then, after 6 months, she will take me off the solucortef and use benadryl instead. The solucortef is used in high doses at first to insure that I don't develop antibodies against the Entyvio. So, this might explain why so many people experience hair loss. If you are taking a cortifoam regularly, that can also contribute to hair loss. 

 

On a side note, the IVIG did great for about a year, and then I started having issues with my j-pouch again. Antibiotics helped my pouchitis. But, I also started flaring in my small intestines, too.... (Crohn's is back, hello!) The Entyvio has enabled me to sleep through the night without gas pains and potty breaks for the first time in 10 years. Other than the hair loss and acne (more attributed to the steroid injection) and some mild joint pain, I've had few problems. I recommend you give it a try if you have pouchitis that you can't keep under control! If you don't want to try it, Oil of Oregano really helped me a TON with the pouchitis and flares until the Entyvio started kicking in. 

How many drops of oil did you take? I read that you need to take it 3 weeks, then one week off? Are you still taking the frankesse oil with the Entyvio? I was thinking of trying there oils for health but afraid it might interact with the Entyvio.