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My entyvio experience.

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Crohn's Disease
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Posted 11/30/2014 4:28 PM (GMT 0)
After four months on Entyvio, I am seeing pretty good improvement (maybe about 50% better). If I reach remission on this drug by month six I will be amazed and overjoyed, it has been quite some time. For the first time in more than a year, I am getting through nights consistently without having diarrhea in the middle of the night, and it is awesome.
Posted 12/4/2014 1:59 AM (GMT 0)
Hi All,

I just thought I would give an update on my experience of Entyvio.

I started on 28th August and had the initial 3 doses and the first of 8 weekly maintenance so am around 10 weeks in. Just after the last infusion I can honestly say I have felt a real difference in my energy levels and especially my bowel activity. I no longer feel the rush to get to the bathroom and I am sleeping through the night with no interruptions.
I still have a very noisy stomach always rumbling but its quite a talking point and I laugh it off.
I nearly always had to have a nap in the day just feeling exhausted but in the last week I haven't even thought about it, the problem now is that with all this energy I find it hard to switch off and get some sleep!
I am curious to see how everyone else is doing on this med.
Posted 1/5/2015 8:21 PM (GMT 0)
Just had my 5th infusion of Entyvio. I've been on it for a little over five months and I'm still improving- very slowly. It would be great to achieve remission on this drug, but I'm not sure how long that may take. I will keep you posted.

My only real critique of Entyvio so far would be how slow it is to work. I have experienced no notable side effects or infusion reactions.
Posted 1/6/2015 2:17 PM (GMT 0)
I had my fifth infusion three weeks ago. My insurance had only approved me for six months of Entyvio, as I believe most insurances had been doing. I was nervous about getting re-approved, since the first approval was so difficult. I'm glad to say my doctor handled it with no problems or pushback. Aetna sent me the re-approval letter (for another six months) within a week!
Posted 1/13/2015 6:08 AM (GMT 0)
I was diagnosed with Crohn's 2 years ago, and have not had any luck with medication. I was taken off remicade because I got autoimmune hep. After that I was put on Humira, but never saw any change in my symptoms. I was hospitalized at the Mayo in Rochester in October for two weeks. Over the last three months I've lost 60 pounds and been in the hospital four different times for at least a week stay each time. They put me on entyvio and 40 mg of prednisone and said if it doesnt work I'll need surgery, because there are no more medications out there to try. My question to anyone who has been taking entyvio is, Have you noticed a difference in pain while going to the bathroom? I'm scheduled for my fourth infusion in 3 weeks. I haven't seen any change really. I still have a lot of trouble eating any kind of food. When I do eat solid food my stomach hurts so bad and I feel like throwing up! When I go to the bathroom my stomach hurts so bad I throw up or feel like throwing up! I'm losing hope that this drug will ever start working, I can barely work part time due to pain and being so tired all the time. Any insight you guys have would be greatly appreciated. I really don't want to have my whole colon removed! 22 years old is to young for a life changing surgery in my opinion!!
Posted 1/13/2015 4:49 PM (GMT 0)
You can try Stelara if entyvio doesn't work.
Posted 1/13/2015 7:13 PM (GMT 0)
Xy123 stelera is the one drug I haven't tried! My Dr is sceptical about it, but I'm willing to try anything!! Thanks for the reply I appreciate any insight or advice! It's funny how just 2 years ago I had never even heard of this disease and now I feel like it's all I think about about sometimes! But there are always people out there with more knowledge and experience so it's really great to have this forum!!
Posted 1/14/2015 8:07 AM (GMT 0)
Had my 6th or 7th dose a few weeks ago. It has gotten me off of Pred and also I have not missed any work in 6 months. I am not in remission and still have some blood. I go anywhere from 4 to 8 times a day. I think most of my colon is clear except the area close to the rectum. Trying hydrocort suppositories to clear this bit up. I still have hope for remission but for now at least I'm getting by
Posted 1/15/2015 1:12 AM (GMT 0)
So sorry BB you are having such a hard time. I too am scheduled for infusion # 4 in a couple of weeks. I would say Entyvio so far has given me much improvement. It definitely helped with the horrible tenesmus and pain that comes along with it. I would say it has helped reduce the inflammation. Along with the entyvio, my Dr. has me using 6mp. Did your Dr. prescribe another drug to be used in conjunction with entyvio. I am also using cortifoam.
I would also say that I have quite a way to go before I can say I am in remission. Entyvio has a slow mode of action.
Hoping your next infusion is the one where you will begin to see a difference. ..Best wishes
Posted 1/15/2015 3:41 AM (GMT 0)
Yea I take methotrexate injection s every week. I was on 6 mp while taking cimzia, but I had to go off it because I was getting terrible stomach pains along with a fever. I'm glad that entyvio is working for you!! It's all just a waiting game to see results.
Posted 1/25/2015 6:43 AM (GMT 0)
I got my 4th infusion a few weeks back. It has taken a lot of convincing myself (not sure why), but I believe entyvio is helping me. There are still some symptoms like loose stool, but for the most part, things like cramps and bleeding only appear randomly every several days. Of course, with my luck, after I post this good news, things might take a turn for the worst.

To any new entyvio crohnies reading this, I just want to say give this drug some time before losing hope.
Posted 1/28/2015 8:06 PM (GMT 0)
My doctor just told me I need to switch from Humira to Entyvio because I've built up antibodies to the Humira (I recently had a blood test to check for Humira antibody levels). Since I've never heard of it, I'm starting my research today and read through this thread for background.

Quick history of me: Crohn's of the small bowel for 27 years (since I was 17) with various stages of remission and flare-ups. Was on Remicade 10 years ago with little benefit. Had a resection due to a stricture 8 years ago, and while they were in there they found I had lymphoma of the small bowel (interestingly, lymphoma is one of the rare side effects of Remicade and Humira). Six months of chemo and I was feeling great for a few years, then the Chron's flared up. Been on Humira since then which worked wonders -- huge improvement after just my first dose. Humira hasn't been doing much for a while now, thus the blood test. Currently on Entocort/budesonide which is helping quite a bit, but isn't a long-term solution.

The other complication is that we sold our house a year ago and bought an RV and now we are traveling around the country sight-seeing full-time. Travel is so much nicer when you can bring your bathroom with you! For Humira, the difficulty was getting it shipped to our current campground each month. But with Entyvio I'll have to find a new place to get the infusion each time. I'll have to research that.

Back to doing more research...
Mike
Posted 1/30/2015 9:19 PM (GMT 0)
My daughter is now on her 4th infusion.of entyvio...technically the first 3 are boosters....she is not happy...had a visit to doctor and he says let's give the 4th and then do a colonoscopy and see what's the change..... She hasn't had any flare ups since July 2012 but doctors say she still not in remission....she was on humira since July 2012.... But all humirA has done is kept her stable but has not put her in remission...she still has the lower Colin region with active colitis. This prompted the doc to put her on entyvio...

She is loosing weight and needs regular blood infusion as her heamoglobin keeps falling...doctors are now talking of surgery....but I am very scared abt it...she is all of 21 and has a long way to go....also since she off humira...her stomach doesn't feel well....

Is 4 months too early to write it off the drug....but then again long long is a piece of string?
Posted 1/31/2015 4:22 AM (GMT 0)
mikef - Walgreens does home infusions. Give them a call and tell them about your living arrangement. Hopefully they are okay with your situation.
Posted 1/31/2015 1:56 PM (GMT 0)
cromom, so sorry your daughter & you are having such a rough time of it. I want to ask you some things.
1) Am I correct to assume she is bleeding a lot still - therefore she keeps needing infusions of red blood cells?
If this is so, this is indicative of a tremendous amount of inflammation. You said it was in the lower colon. If it is at the rectum & up to the sigmoid colon, cortenemas & possibly cortifoam might help reduce the inflammation. Was she ever prescribed these meds?
As far as the weight loss, she won't be able to put on weight until the inflammation subsides.
I myself am on Entyvio and will receive # 4 infusion this week.
I would say stay the course for now. Do # 4 infusion. After a period of time your daughter should have the colonoscopy. This way the Dr. can see from the best vantage point if there are any changes to her colon.

While on the first 3 infusions, has your daughter had any changes to her symptoms - even subtle changes?

I am hoping that # 4 could be the one that makes the big difference for your daughter.
Best wishes & please update....
Posted 1/31/2015 9:19 PM (GMT 0)
Twigirl812 she is not bleeding and hasn't bled since July 2013. But somehow her blood levels drop. Yes is is around the sigmoid colon region but the doctor hasn't prescribed the meds you named.

She doesn't feel good after she has been off humira and on infusions....in fact she feels she is sliding.....she is not happy...

As you rightly said, colonoscopy is now scheduled for 13th March....one month after her vedo infusion......let's see....
Posted 1/31/2015 9:42 PM (GMT 0)
OK Cromom. Stay the course & I am wishing you the best.
Posted 2/1/2015 4:38 PM (GMT 0)

dustydesk said...
mikef - Walgreens does home infusions. Give them a call and tell them about your living arrangement. Hopefully they are okay with your situation.

Thanks! I'll look into it. If they do it at Walgreens stores, then it's easy for me to get to those any time. I'll do some research...

Mike
Posted 2/6/2015 7:59 PM (GMT 0)
mikef- please let us know how you fare getting Entyvio infusions on the road. Getting infusions at Walgreen's (or elsewhere) could be really convenient for travelers, or if the infusion came up over a vacation or something.
Posted 2/10/2015 1:35 PM (GMT 0)
I am new at this, so here it goes. I was reding Nice Cup of tea's response about having surgery Feb. of 2014. Are you happy with the surgey and are you still feeling well? I have failed every Crohns drug and I am currently on Entyvio since October. I am also steroid dependent. i don't think the Entyvio is working and I am tired of the steroids. Is surgery the answer? I appreciate any feedback.
Posted 2/10/2015 7:21 PM (GMT 0)
@Kerrilynn- I would give the Entyvio at least 6 months to work. It really does seem to take that long.

Hopefully NCOT will be along to discuss this with you, but you may want to private message her.
Posted 2/10/2015 8:18 PM (GMT 0)
Thanks I am just frustrated as nothing works for me. I held high hopes for Entyvio, but I can't get off the steroids. My Crohns doc said that surgery may be the way to go. He said that several of his patients are very happy with the way they feel after surgery. His idea is to give me a colostomy since my Crohns is primarily in the rectum and give that area a rest and then they can fix the fistula I have there. They will let everything heal there and then do surgery again to remove the colostomy. I appreciate any feedback any one could give, for now I am staying with the Entyvio, steriods, and lots of prayers. :)
Posted 2/12/2015 2:07 AM (GMT 0)
Started Entyvio last week and hoping it works. Also taking prednisone. I had surgery to remove my colon in December 2013. Due to the damaged condition of the colon, my GI suggested I think about surgery. I did and things were great for 6 months. I currently have a j-pouch. Unfortunately, I have Crohn's and experience symptoms with the pouch, similar to a flare. It has helped a little though as I do not have as many BMs a day, and less urgency to go without the colon.
Posted 2/12/2015 2:31 AM (GMT 0)
I am almost 5 mos into Entyvio and like kerrilyn I am steroid dependent.
After the third infusion and still unable to lower pred. we added methotrexate injections. I have now been able to lower the pred from 40 mg/d down to 15 and budesonide from 6 mg to 3.
symptoms are also improving.
I also added my own homemade gaps bone broth to my PALEO diet and that also helps
GI did mention surgery.
not for me I am holding on to what I got as long as I can.
Posted 2/15/2015 6:58 AM (GMT 0)
Kerrilynn I know exactly how you feel. I've failed every med and have been on prednisone for 6 months now. I just spent 11 days in the hospital and got out 2 weeks ago. I was scheduled for surgery, but decided against it! While in the hospital they put me on TPN and that has seemed to help me a lot! I just had my fourth infusion a week ago and can say I've just started to see a small bit of improvement. It's frustrating how slow this drug is at kicking in, but there's no turning back after surgery! That's what scares me. I hope you can hold on till your next infusion and start seeing improvement!
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