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Entyvio (Vedolizumab) Support Group

Gail,
My daughter takes dilaudid as needed. The thing with a patch I would think it could become addictive of used constantly but not if used occasionally.

In answer to your other answer above. My daughter does not smoke and has never smoked and no one in the family does either. I a, think I g maybe it is an anxiety thing. But she has not complained in a few days.
 
I am currently in my 5th year on an open label study with this drug. I have been well and in remission for the 5 years. The study will end Dec. 2016. I will not know after Dec what my choices will be. Currently this drug has been only approved for UC patients only,:ymad: and I have Crohn's. :(
 
I am currently in my 5th year on an open label study with this drug. I have been well and in remission for the 5 years. The study will end Dec. 2016. I will not know after Dec what my choices will be. Currently this drug has been only approved for UC patients only,:ymad: and I have Crohn's. :(
I'm taking for Crohn's. It is being paid for by the drug company.
 
Location
Canada
I am currently in my 5th year on an open label study with this drug. I have been well and in remission for the 5 years. The study will end Dec. 2016. I will not know after Dec what my choices will be. Currently this drug has been only approved for UC patients only,:ymad: and I have Crohn's. :(
Ditto as LGP. I see were all in Canada. Should be the same for you.
Glad to hear its working for some of us.
g
 
It dawned on me that I only post in this forum when things are going bad...then, when I am feeling good, I forget about it. SO, I wanted to post and let everyone know that I have been on Entyvio for a year, and I am feeling great. It does not work for EVERYONE with Crohn's, but I am proof that is DOES work for some of us. It took a good 3-4 months before I was really able to feel the effects, but now I feel great! Hang in there everyone!
 
Pinktea, what is the drug you are doing trials on? I could not tell from the postings. Thanks for the good news, Rockdawg. I am doing better too, on Entyvio but still take Budesonide and the pain patch. I think the pain patch, Fenanytl, causes me to feel sad.....
 
Recently compiled safety data from all clinical trials on Entyvio ... show the drug is associated with low rates of new serious infections, infusion-related reactions, and cancers.

The study ... found that Entyvio treatment was not associated with an increased risk for infections, either serious or benign. The rate of malignancy ... was consistent with that observed in patients with IBD normally.


Brief retelling (no numbers): http://ibdnewstoday.com/2016/03/04/good-long-term-safety-of-entyvio-in-ibd-patients/
Original in the "Gut" journal (lots of numbers): http://gut.bmj.com/content/early/2016/02/18/gutjnl-2015-311079.full.pdf

No more sunscreen and wearing a surgeon mask in crowded places? =)
 
New to site I was off work for 13 months 3 fistulas 60-100 times in bathroom was on just about everything then Entyvio came along and has made things so much better have to watch my diet a little but can have a cup of coffee among other things I just couldn't drink or eat before don't wait it has brought me around .
 
Wow Chris, 60 -100 times per day? My goodness. Many of us feel like we're living in the bathroom, but you really did your time soldier. So glad you're free.
 
I was about to have my 3rd infusion of Entyvio yesterday when my doctor returned my call and I told him for the last week my face was burning and then peeled like a bad sunburn. He thinks it's an allergic reaction to the Entyvio and told me not to get the 3rd infusion. He said he's never seen anyone with a rash reaction. I have an appointment to go see him next week. We are back to the drawing board for a treatment. I was diagnosed in November and have been taking Budesonide since then. I waited months for approval for Entyvio. I hear so many negative things about the other treatments. I just don't know what will be my best option at this point. Anyone hear of such a reaction?
 
I was about to have my 3rd infusion of Entyvio yesterday when my doctor returned my call and I told him for the last week my face was burning and then peeled like a bad sunburn. He thinks it's an allergic reaction to the Entyvio and told me not to get the 3rd infusion. He said he's never seen anyone with a rash reaction. I have an appointment to go see him next week. We are back to the drawing board for a treatment. I was diagnosed in November and have been taking Budesonide since then. I waited months for approval for Entyvio. I hear so many negative things about the other treatments. I just don't know what will be my best option at this point. Anyone hear of such a reaction?
That unfortunate. Is there any chance they could pre medicate you with a bunch of allergy meds and see if you can continue. Just if its not from Entyvio it would be a shame to stop because of a maybe reaction that isn't anaphylaxis when maybe the med could work for you.
 
I will have my third infusion (6 weeks since I started) next week. It's hard to say if I've seen any change. Maybe less blood in stool? Less tenesmus? I was on prednisone until about 2 weeks ago. Also, during the loading dose I had a fistulotomy, about 3 weeks ago. That messed up my colon/rectum enough where it was difficult to see any progress - I was obviously bleeding from the wound, in addition to inflammation from disease. I'm trying to remain optimistic that this drug will get me in remission for a while. I was on remicade. This worked very well, got me in remission for two years - then I developed a reaction to remicade. Next, Humira. Humira did not do anything for me.

I still pass a lot of gas and mucous, but BMs have decreased as has urgency. Nowhere near "normal" though. I would say overall, main Entyvio side-effect is fatigue. I am very fatigued. All the time. But then this disease is exhausting - blood loss, straining to go to the bathroom many times per day, stress from trying to work and manage symptoms, etc. I used to be a very active person - ran many marathons. Now, totally sedentary.

My short term goal is to get into remission, or even just more manageable so I can enjoy upcoming cruise.
 
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My daughter just had surgery for a stricture. She has been on entyvio for one year. The surgeon said that except for the small section with the stricture the rest of her intestines looked really good. She thinks that the Entyivo is working and now that we got rid of the one section that wouldn't heal hopefully she will go into remission.
 
I've been out for far too long. Been catching up on everyones posts. Looks like entyvio is working for some, kind of one of those meds that's hard to tell if its working or not.

Biggest complaint from my wife thus far is the fatigue. Absolute fatigue. Sleeping 12-16 hour days (on and off of course). She is now on her 8th dose. There is no sign of inflammation in her bowel (upper or lower). Currently she has surgery scheduled for a "takedown" surgery to remove her temporary ostomy and reconnect her j pouch. Second biggest complaint is the nausea. Absolute nausea almost all the time! Zofran must be kept close, Carafate & Phenergan are also used as needed which is pretty much everyday.

The doctor initially created a temporary ostomy because she was having fistulas forming near the j pouch, and creating external openings down there.

Its been really rough for her. But not sharing what she's going through isn't going to help anyone either! So I'm back on the bandwagon. Sorry I've been out for so long. Tend to get caught up in the craziness.

She finally qualified for the Entyvio Assistance program this year, so that was a big plus. Usually a day or two after the infusion, she's completely shot. Body just went through a lot I suppose. Right now she's going through a lot of side effects, and we're not sure if it's attributed to the Entyvio or other drugs she's on. But everything points to the Entyvio.

A question asked to her doctor this past month "if the entyvio is working, then why am I still getting fistulas?" Doc wasn't able to answer that question.

I understand that there is a test that can be done to determine how your body is reacting to the Entyvio correctly yes? Tests your markers or something along the line...

Drugs currently taking:

Entyvio every 6 weeks
Sertraline
Dilaudid
Bentyl
Limotil
Protonix (was on Dexilant - but caused horrible vomiting & dry heaving)
Carafate as needed
Ondansetron
Phenergan
(there's some others I'm forgetting!)
Various supplements are also used to makeup for lack of nutrition


She is prednisone resistant at this point. Doesn't do anything. Was on 90mg at one point, feel like the steroids only caused more issues. Praying for the best for the upcoming surgery!

Prayers to all in need! Hope healing comes your way.


Jon
 
Has anyone experienced hot flashes from the Entyvio? The flashes I have now are more intense than when I went thru menopause. The only other symptom is a little bit of fatigue. Still not sure if medicine is working or not. I will have my colonoscopy done on June 21st so I should know more then.
 
My daughter just had surgery for a stricture. She has been on entyvio for one year. The surgeon said that except for the small section with the stricture the rest of her intestines looked really good. She thinks that the Entyivo is working and now that we got rid of the one section that wouldn't heal hopefully she will go into remission.
I came on to post a similar thing! I had a scope recently that showed no active disease, but ileocecal valve is not working so hot apparently. I have some scarring in that area that will likely require a resection.

I started Enytvio in August and was able to get off steroids in November.
 
Has anyone experienced hot flashes from the Entyvio? The flashes I have now are more intense than when I went thru menopause. The only other symptom is a little bit of fatigue. Still not sure if medicine is working or not. I will have my colonoscopy done on June 21st so I should know more then.
Nope. I get wicked hot flashes from prednisone but haven't experienced that with Enytvio.
 
Wow, jtwist01, your wife is having a rough go. Maybe her fatigue could be from something else? How is her iron? b12? anything going on with her thyroid?

My fistulas are still not great. I am on Flagyl and Cipro to keep them from draining and getting inflamed (perianal ones). No new ones have formed though.

I've not heard of the test to see how it is working. Interested to learn more if you find out anything.
 
Hi all! Been ages since I have posted. Nice to see a decent amount of positive results, wish there were more!! I have been on entyvio now for 18months. Had to add prednisone for the last 8 or so months trying to taper off. MD wants to restart 6mp in addition to entyvio (which he feels is working) although I have list about 10 lbs this past two months and the N and V is horrible. Did some iron infusions to get my levels up and also B12 injections. I too am having horrible facial flush issues. That never happened before. Feeling very discouraged and alone even though I am surrounded by a loving family. Sending positive thoughts to all of you trying to get through every day!!!
 
I am on my 3rd Entyvio infusion - week 6. Now I move on to every 8 weeks. There might be very marginal improvement at this point. But that could be from any number of factors. I've been in a flare for just shy of a year. It's been very trying at times. Late in the day, the day AFTER Entyvio infusion, or the second day after infusion, I start getting extremely fatigued. This lasts for about 2 days. I was on a 4 week course of Prednisone until about 2 weeks ago. I'm trying to remain optimistic about this drug. I will say I have a marked decrease in blood in my stool. I rarely see this now. If I strain particularly hard (our friend, tenesmus), I may see a little blood. This could be from the fistulotomy - which may not be quiet healed...
 
Hang in there, Colbydog! It took a while to see improvement - probably until I had two maintenance doses under my belt. It is the same for me with day after or two day after fatigue, but that is pretty much my only side effect.
 
I started Entyvio in August. I went through all the loading doses with horrible side effects ever time. Extreme fatigue, headaches and body aches. After finishing the loading doses I did 2 on the every 8 weeks schedule with still no improvement. My Dr switched me to every 4 weeks and now after 9 months of being on this drug (and it was a struggle to continue with what seemed no relief and the side effects) I have finally started to find the relief I've been searching for. The side effects have subsided to some fatigue the day after the infusion but very bareable. Stick with it! It's a slow working drug but when it finally kicks in, it's definitely worth it.
 
Wow, jtwist01, your wife is having a rough go. Maybe her fatigue could be from something else? How is her iron? b12? anything going on with her thyroid?

My fistulas are still not great. I am on Flagyl and Cipro to keep them from draining and getting inflamed (perianal ones). No new ones have formed though.

I've not heard of the test to see how it is working. Interested to learn more if you find out anything.
Yes! She's had it rough for TOO long! I keep praying for a break, if not complete relief! Her fatigue I'm sure is a combination of a lot of things, besides all the medical stuff she's going through, it's having its toll emotionally too. She takes a regular iron supplement, and has had iron studies, she's tried the b12 injections before, but they didn't really do anything but drain the wallet, lol. Fistulas were repaired by a colorectal surgeon, and in order to let that site heal, she's now been with a temporary loop ileostomy for about 9 months, which has been no fun (openings for the loop are very close to the skin - so it's hard for her to get a good seal).

Surgeon says everything looks good and is healed up so the takedown surgery is in a few weeks, she's really looking forward to that! She too was on Flagyl & Cipro. Won't do Flagyl anymore though due to the neuropathy it caused (still has some residuals from it in her hands and feet).

Next gastroenterology appointment we're going to ask, although all physical signs point to good!
 
Location
Canada
Hello Fellow entyvio people.
Been a while since I been here.
Things are going good for me.
I guess it's human nature not to post as much when things are ok. I know many of you are still suffering.
Wishing you all good health.
Gary
 
Hello everyone.
Newby to the Crohn's/Entyvio blog (any blog for that matter). Have had Crohn's for probably 25 years, misdiagnosed the first 15 or so.
Have been through Lialda, 6MP, Remicade and Humira. Doctor now suggesting Entyvio but she did not seem 100% sure about it. Suggested I do some research on my own before I go back to see her. I have an awesome doc, Dr. Robyn Rutherford at Emory Clinic in Atlanta, and trust her 100%. Glad I switched about 4 years ago. Had a recent colonoscopy which was really angry looking. Disease seems to slow down or go in slight remission each time I try a new drug, but ultimately gets back to where I was and then some.
10 years ago I had a fistula - attached to my bladder. Had that repaired along with a colon resection that included part of my rectum. Currently have a reoccurring rectal fistula that bothers me but doesn't keep me from doing anything - so I just accept it. Surgeon wants to operate but I'm reluctant to take the chance that it will somehow affect my Crohn's.

Anyway...

I'm 90% sure I'm going to try Entyvio and see what happens. Not a lot to lose at this point. First call was to Humana and they said it's not covered. Will get my doc to make contact and see if they can get it approved.

Prednisone is my cure-all. I assume she will put me on it during the transition. Does anyone have any advice for the transition from one drug to another like Entyvio - since it takes a while to grab hold?

Thanks.
 
I'm about to get my second maintenance shot for Entyvio. Been On Entyvio for about 14 weeks. Slowly I'm seeing some improvement. I have reduced/eliminated bloody, watery stools, and gone from hourly BMs, to maybe once every 3-4 hours. But I still have an urgency problem. I've been through all the drugs up to Remicade and Humira, and of course, prednisone. My flare up was particularly bad as I transitioned from Humira to Entyvio, so I was on 60mg of Prednisone. Entyvio is slow to act. I'm hoping I will continue to improve to the point I can regularly exercise and don't have to scope out bathroom locations everywhere I go. I had a fistula, corrected with a fistulotomy (sp?) And that, thankfully, has not recurred.

Also, Entyvio runs about $7500 per dose, including the nurse. BCBS covered me, no problem. I had to pay $15 co-pay.

So, bottom line, Entyvio will not have an immediate affect - weeks at best, probably months. If you are in rough shape, your doc will have to prescribe something to help you along, more than likely, Prednisone.

I've had no side-effects from Entyvio, though my doc wants me to start regularly seeing a dermatologist, as there is a risk of some types of skin cancer.
 
Got approval for Entyvio from Humana in record time. They told me that it was not approved. My doctor called and got it done same day.
First infusion is tomorrow. Fingers crossed!
 
Wish you the best.
Hi been quite a while for me! It's been a year and a half on entyvio, with definitely ups and downs. Been on a down spiral for a few months adding prednisone and now 6pm to the mix. I have lost quite a bit of weight and losing stamina. Thank goodness for my kids and husband who need and support me to get me through each day. Still trying to work part time but that has been a challenge as I am destroyed by the day's end. Does anyone else feel like their throat is closing and they are having trouble swallowing? It's making me nervous. Wishing everyone the best !!
 
After having Azathioprine (couple months with no improvement) and Remicade fail (4 infusions with no perceived side effects but no improvement in symptoms) my doctor is trying to get my insurance to approve Entyvio. Since I'm having a flare up after going off Prednisone prescribed as a bridge until the Remicade might take effect, I'll go back on Prednisone shortly. Prednisone takes care of my symptoms and let's me eat pretty normally but obviously is not a long-term solution so I'm hoping the Entyvio works for me. Very helpful to read of the experiences of others!

Support to all the others here with worse symptoms than me. I've had a tough couple years after having digestive issues my whole life but being able to function. Once diagnosed in Fall of 2015 I at least know what's going on with me and entercort or prednisone has been able to reduce the inflammation so I can eat. I can almost always work and function in the morning so I try to get as much done early in the day!

The only advice I have to share with everyone is that I find exercise and pilates in particular very helpful--getting my daily workout in the morning gets my day off to good start even if I'm feeling horrible otherwise.
 
After having Azathioprine (couple months with no improvement) and Remicade fail (4 infusions with no perceived side effects but no improvement in symptoms) my doctor is trying to get my insurance to approve Entyvio. Since I'm having a flare up after going off Prednisone prescribed as a bridge until the Remicade might take effect, I'll go back on Prednisone shortly. Prednisone takes care of my symptoms and let's me eat pretty normally but obviously is not a long-term solution so I'm hoping the Entyvio works for me. Very helpful to read of the experiences of others!

Support to all the others here with worse symptoms than me. I've had a tough couple years after having digestive issues my whole life but being able to function. Once diagnosed in Fall of 2015 I at least know what's going on with me and entercort or prednisone has been able to reduce the inflammation so I can eat. I can almost always work and function in the morning so I try to get as much done early in the day!

The only advice I have to share with everyone is that I find exercise and pilates in particular very helpful--getting my daily workout in the morning gets my day off to good start even if I'm feeling horrible otherwise.
My doctor liked it when I was on the elliptical.
 
My doctor liked it when I was on the elliptical.
Hi all! Wishing everyone well as summer kicks in! I am feeling more and more like garbage after a 18months on entyvio ( plus various rounds of prednisone and supplemental 6mp). Can't gain wait or keep food in long despite low res and fodmap diets. My throat feels like it's closing and I want to just cry. Thankfully I have my family that needs me but it's getting harder and harder to keep up and work part time. How r u guys doing? Should I quit the entyvio at this point?!?!??
 
Have you tried any of the protein shakes to gain weight? I would ask your doctor first but it might be time to try another biologic.
 
Location
USA
Hi all!

Looks like I'll be joining the club. I built up antibodies to Humira after about 7 months of use. My GI then put me on Remicade in combo with 6mp, and I still built up antibodies within about 5 months!

Has anyone had luck on Entyvio after having built antibodies to anti-TNFs?
 
I had built up anti-bodies to Remicade. Humira never worked for me. So far, no problems with Entyvio - though I had a minor skin itching thing. Entyvio - slow improvement, have my 2nd maintenance shot this week.
 
Hi everyone 😊 Hope your all doing well!
I start Entyvio on the 19th July (the infusion clinic at the hospital seems to be very busy!) I have a fistula that proving to be quite stubborn. I was put on humira after being on azathioprine and having a seton put n place but the humira isn't working so I'm being switched to the entyvio. I'm looking forward to something hopefully working and getting the seton took out which I had placed back in October 2015. Just wanted to know if anyone had a similar experience and I appreciate any advice you can offer!
Thanks 😀
 
I had a stubborn fistula - also developed in October 2015. Surgeon opted NOT to do seton, but went straight to fistulotomy. I had that procedure in May. Hope to never have to repeat that fun-ness, but it did finally heal. As far as Entyvio, I've seen very slow improvement. Been on Entyvio, also since May. I hope for "normal" intestinal function, but I'm still coping with issues. Any improvement is welcomed. However, I have minimal bloody stool, minimal mucous, improved to somewhat loose stool, less frequency, but urgency still remains. Once I feel the urge, I have seconds to find a restroom. Not a good way to live. I try to empty my bowel whenever I can. I've learned the first thing I do when I get to a restaurant, got to the market, big-box store, whatever - is find the restroom and empty my bowel - urge or not.

It seems some folks experience fatigue the day after or the 2nd day after an infusion. I am usually fine the day of the infusion. Unless they give you Benadryl or some other antihistamine - then you might be drowsy enough to warrant being driven to/from the infusion center. However, for me, the day after or 2nd day I was very fatigued. Work was not really possible. Within a day or so I was fine, though. I've had no other complications. I did develop a minor skin rash, but this may have been coincidental and has since cleared up.

Good luck with the Entyvio! Just keep in mind it's slow acting. You may not notice an improvement until 9-10 weeks.
 
Thanks for replying colbydog 😊
My surgeon opted for the seton because my fistula runs straight through my anal sphincter and didn't want to leave me incontinent. Yeh people keep saying it takes a while, like remicade and that is why I chose the humira but now that's not working because I built up anti bodies very quickly and that's why my GI decided to switch from the tnf blockers.
I'm glad your fistula healed... I'm trying to be hopeful mine will too. I hate the rushing to the bathroom, I am the same when I need to go I have seconds to get there or it gets rather embarrassing 😷😳 I suffer with chronic fatigue also and have B12 injections so hopefully it won't make me more tired or I may have to hibernate for a week lol
 
Location
Canada
Although feeling much better, my gastroenterologist says, "Although improved, there is still some inflammation"
Doc thinks it will be beneficial for me to be on entyveo every 6 weeks.
Still taking with methotrexate, supplemented with folic acid and self administerd monthly B-12 jabs.
Anyone else on every 6 weeks or following this recipe?
Gary
 
I am every 8 weeks, wondering if doc will change. I was feeling pretty good after my last infusion (30 June). Felt great through the 4th. Then- ba-bam! - got some of the worse, bloody, mucous diarrhea ever. I still have not recovered. Been a week of barely functioning. Drove with family 4 hours to Vermont for vacation. Had to stop nearly every 45 minutes to find a bathroom. Was basically immobile for vacation. I'm on every 8 weeks. When I call gastroenterologist today what will he do? Stop Entyvio? Though there are no non-surgical options left I am aware of. Increase to every 4 weeks? I'd like to keep going because I'm optimistic. It's only been about 5 months on this drug. But on the other hand, when can you say "it is not working"
 
Colbydog,
Like I said it took switching my daughter to every four weeks and almost a full year to get her where she is today. I would ask the doctor to try every four weeks.
 
Hi

I have been on Entyvio for about a year. My dosage was changed from every 8 weeks to 6, and that has seemed to help. Now I am experiencing significant aching in my legs. Elevating them doesn't seem to help. The Entyvio does not seem to have put me into remission, but has decreased the trips to the bathroom. Previously I was on Remicade and the side effects were awful.

Also have been experiencing dry heaving and nausea on a daily basis. Changed gastro and she is treating these symptoms as GERD, has given me meds and it has helped

Does anyone else almost get into remission and deal with leg pain?
 
Hi,

I hope to give others hope with Entyvio. I have been diagnosed with Crohn's for 20 years. I am a CPA with a demanding work load ands busy family life.

Before Entyvio I had tried every drug on the market with no positive results. I thought I was going to die. I was so anemic with the blood loss I could hardly function. I missed a lot of work and was at the point that I didn't know how much more I could take.

I started Entyvio in 2015 and my life has changed 200%. I would never go out to eat and most of the time I just ate crackers. In the past year I have not missed a day of work and have actually worked 416 hours of overtime. I'm not saying I don't have days were I might bleed but when I do, I take Budesonide, and the bleeding will go away.

I still get anemic once a year and I have to receive iron infusions. For those that are extremely fatigued iron and b12 is probably the reason. You would be amazed at how great you can feel after your iron infusions.

I just wanted to give others hope that it can get better with Entivio. No, it's not 100% but I have a quality of life back and a career that I thought was going to be over.
 
I start Entyvio tomorrow along with Entocort, methotrexate and folic acid. Newly diagnosed less than a year ago (also non-symptomatic until last summer). I have the basic variety of Crohns, none of the "bells & whistles" others experience except an obstruction last weekend-quickly cleared. I just want to stop the progression and eat again.
 
Hello Folks,

I am new to to this thread, I am a 34 year old Male in the UK. Diagnosed with Crohn's 17 years ago, no surgery all symptoms managed with medicine. I have now started Vedo Tuesday gone with first infusion. Went OK just feel really tired now few days later, no other severe side effects so far.
 
So I've had my first dose of Entyvio, its been 9 days and I have noticed the following side effects:

Cold like symptoms, particularly the sinus area. Fatigue. Mild Headache's. I wont complete the loading dose until another 8 weeks.

I really hope this is effective for me having previously used Infliximab but was taken off after development of Lymphoma. That, thankfully was treated successfully and I have had the all clear for coming on 5 years now.

Coupled with Crohn's Disease the whole time has been challenging but I give huge credit to the The National Health Service, for me the care I have received has been exemplary and I've been a regular Visitor for the best part of 20 years.

I am glad this treatment was approved, but at the same time I, mindful that studies show it works much better treating UC than it does Crohn's.
 
Hi,
Started on entyvio over a year ago. Hasn't really helped. Used to be on remicade, which really did help, but it caused drug induced lupus, so I had to come off it. What's the next step after entyvio?
Sue
 
Free in Canada as well....thankfully!!
Not across the board free in Canada. Are you getting through a patient support program? It was initially covered by the drug company for me, but now that it is approved in Canada for Crohn's, I have to go through my private insurance (through work) which is thankfully very good and will cover it.
 
So I've had my first dose of Entyvio, its been 9 days and I have noticed the following side effects:

Cold like symptoms, particularly the sinus area. Fatigue. Mild Headache's. I wont complete the loading dose until another 8 weeks
I think that's is a fairly common set of side effects. I mostly just get really tired a day or two after.

It's been very effective for my Crohn's, finally getting me into remission after a more than 3 year long flare. It did take 6 months for it to get me there, though I started to feel better after the first maintenance dose.

Hope it works for you!
 
Not across the board free in Canada. Are you getting through a patient support program? It was initially covered by the drug company for me, but now that it is approved in Canada for Crohn's, I have to go through my private insurance (through work) which is thankfully very good and will cover it.
I assume it is covered by a patient support program through the company that makes it and also administers it via their own private clinics. However in a pamphlet put out by the Nova Scotia gov't- they indicate there is no cost for the infusions (google Entyvio Nova Scotia).

I am sure if we had private insurance, the cost would be covered by them first.
 
I've had 2 loading doses of entyvio and due for my 3rd next week. I am on day 4 of firmed formed BM's. Still dealing with diet related pain but beginning to work thru what exactly bothers me. For example- I can eat chicken wings, but not breaded ones. Fatigue still overwhelming, but I think if I can get some decent nourishment in me that may help. Side effects are minimal and tolerable. My concern is what happens after the loading doses. I did well while on the high loading humira, but when I reduced down to regular doses, it didn't work. Crossing my fingers on Entyvio.
 
just had my first dose today...all good during the waiting period after( just a bit of leg cramping and a bit of niggling stomach pain)...left after 2h and the stomach pain changed into a debilitating pain :( i had to drive 1h home and honestly i cant remember how i got home on the couch...really really strong pain...after an hour home when i went o the toilet i had a very bloody stool to the point of passing out :( ....anyone had anything similar? im ok now(4h later) after taking some oxycodone ....not sure if i should call the dr or wait till tomorrow? I stopped humira 3 months ago as it wouldnt work for me anymore, went through a very violent flare up and been starting entyvio...if this fails will need surgery again so i have my hopes high in this
TIA
 
It may just be a coincidence. I would call Dan let your doctor know. It does take quite a while to see improvement on Entyvio so don't expect instant results.
 
I did Remicade ~6.5 years, pronounced peaks and valleys in the 8 (then 7, 6) week cycle. Variable effectiveness among periods. It tailed off gradually at the end. I'd give it a B- overall.

Humira gave me the best 2.5 months of my life since diagnosis to that point, and then dropped off like a rock. An optimistic doc had me try it again for 3-4 months a year and a half later, with literally zero benefit.

I've been on Vedolizumab a little over 4 years (though at 4 week doses), and it's been the best sustained feeling I've had since diagnosis. It took up a little slowly (though faster than Remicade), and I had a troublesome withdrawal from Pred shortly thereafter, but once my body stabilized, it's been smooth sailing. No negative side effects, no up and down -- I feel the same 2 days before infusion as 2 days after.

I'd recommend it even if the others failed.

Hi all!

Looks like I'll be joining the club. I built up antibodies to Humira after about 7 months of use. My GI then put me on Remicade in combo with 6mp, and I still built up antibodies within about 5 months!

Has anyone had luck on Entyvio after having built antibodies to anti-TNFs?
 
I'm from Brazil.

I've tried Remicade for a 5 months. It was the best drug for me, I was in a really bad and Remicade bring back to life.
For my bad luck, it did not work for long time.
I've changed doctor and the new one changed for Humira and azathioprine.
I feel better, but not as with Remicade.
My Doc is studying go back with Remicade, he thinks it stopped working very fast and he is finding that fact stranger.

He talks about Vedo, but Remicade is a more powerful drug and can act faster.

What you think, guys?

Thanks
Renan
 
I have been asked to consider Entyvio. I'm really concerned about the "inactive" ingredients. One may be an irritant to the stomach and there is a ton of sucrose--actually more than the actual active ingredient. It is known to cause weight gain and I just went through that with Humira. All of my symptoms were masked and I appeared to be doing well when on the inside, I was really inflammed and developing ulcers.

Can anyone tell me a positive story about Entyvio that has been on it awhile?
 
I have been on Entyvio since the end of August. Humira trial of high loading doses failed me all spring.

I have had 3 infusions at 0, 2 & 4 weeks. Because I have had obstructions (4 since early Aug) I am going on a 4 week schedule. My next infusion is Nov 9. I started presnidone 40mg's, cipro & flagyl after my last obstruction that put me in the hospital for 4 days 2 weeks ago. There are success stories out there and I will send you a link via message. Entyvio can take longer, quicker with UC than Crohns. If I can avoid obstructions I am giving this 6 months.

I am on a soft residue diet and I feel good, not great. I gained no weight until I started the prednisone. I have no side effects that I attribute to entyvio. I still have very soft BM;s 6-10 times a day, no pain. Before the last obstruction I had 2 days of normal well formed BM's.
 
Hi..Im new to the group.. Diagnosed with Crohns in 2003, have been on remicade, Humira, and now entyvio. Im not sure the entyvio is working..since I am having serious gas pains which honestly im not sure if my cramping is crohns related or gas related sometimes. I am also passing (pardon me for putting it all out there) -Bloody mucus masses -Is this normal??
 
Oh my belly,
How long have you been on Entyvio? It takes quite a while to work.
Sadly I think for my daughter it has stopped working as well as it was. Her doctor is sending us to see a different one who is in a University setting and may have access to research studies.
 
bloody mucous masses are definitely not normal! How long have you been on Entyvio? It has worked very well for me, but did take 3 months to see any improvement and 6 months to really kick in. You might need a little something extra until that happens.
 
Oh my belly,
How long have you been on Entyvio? It takes quite a while to work.
Sadly I think for my daughter it has stopped working as well as it was. Her doctor is sending us to see a different one who is in a University setting and may have access to research studies.[/QUOTE

I have been on it for Aprox 3
Months
 
bloody mucous masses are definitely not normal! How long have you been on Entyvio? It has worked very well for me, but did take 3 months to see any improvement and 6 months to really kick in. You might need a little something extra until that happens.
I have been on it approx 3 months now
Am also finding I'm having so much gas pain it's almost as bad as the abdominal pain from the Crohns - sometimes hard to tell the difference
 
It takes a minimum of six months to work. Some doctors put patients on methotrexate for that first six months to help it kick in faster. Maybe ask about that. Have you tried taking mylicon with meals for three days to see if that helps?
 
Free in Canada as well....thankfully!!
In the United States, the manufacturer provides a co-pay assistance program those who are on private insurance (not medicare or other government insurance) can reduce the out of pocket expense to $5.00 / infusion. Next best thing to free, and the co pay assistance program is no charge to the patient.
 
Entyvio has been a wicked beast for me. I had a headache during infusion that has lasted 6 days so far. The side effects so far are worse than Crohn's. I was at least managing to work full-time but I've had to use sick time because the diarrhea is worse and I feel like I have the flu. I even had a flu test because I was convinced it couldn't be side effects. Ugh.
 
I was flaring so bad when I started Entyvio that I lost 40 pounds in under two months. I had little hope it would make a difference, but it put me in remission within 8 weeks. Before my loading doses were finished my Crohn's was completely under control. Don't lose hope, this drug has been the answer for me.

Unfortunately it does not control my joint pain. I will be switching to Stelara this week, but I am devastated to go off of Entyvio because my Crohn's has never been better. Sidenote: my Crohn's is almost exclusively in my colon.
 
Entyvio has been a wicked beast for me. I had a headache during infusion that has lasted 6 days so far. The side effects so far are worse than Crohn's. I was at least managing to work full-time but I've had to use sick time because the diarrhea is worse and I feel like I have the flu. I even had a flu test because I was convinced it couldn't be side effects. Ugh.
Hi

The flu like symptoms do go away but for me only in the last 3 or 4 weeks. I'm persevering in the hope it kicks in soon.
So I've had my first dose of Entyvio, its been 9 days and I have noticed the following side effects:

Cold like symptoms, particularly the sinus area. Fatigue. Mild Headache's. I wont complete the loading dose until another 8 weeks.

I really hope this is effective for me having previously used Infliximab but was taken off after development of Lymphoma. That, thankfully was treated successfully and I have had the all clear for coming on 5 years now.

Coupled with Crohn's Disease the whole time has been challenging but I give huge credit to the The National Health Service, for me the care I have received has been exemplary and I've been a regular Visitor for the best part of 20 years.

I am glad this treatment was approved, but at the same time I, mindful that studies show it works much better treating UC than it does Crohn's.
 
Slightly off topic. Can you guys suggest the best Prednisone taper for a flare as the one suggested by my Consultant works only until I reduce from 30mg to 20mg then the symptoms reappear?
 
I am currently on a taper of prednisone and when I get down to lower doses I get pain coming back almost every time. I have been sick for a long time so I have had to do the taper many times. It's scary, frustrating, and depressing. I would take the drugs the way your doctors are telling you to. Because they know your situation better than anyone else. Everyone has a different way their body handles drugs, we are all different. Sounds like your disease is not under control if your pain is coming back when lowering your prednisone dose. Just be truthful with your doctor's and let them know that. It could always be worse, things will get better if just may take some time.
 
Started entyvio in december, have had 2 loading doses so far. Have come down with the flu (which my Dr. said might be due to the enytvio-exhausted, no appetite,lots of gut trouble-can't sleep through the night without getting up at last twice-copious amounts , loose and watery.Am afraid of losing more weight, am trying to stay well hydrated. Huband is unresponsive-"just the flu" (odd because he has UC-you'd think he'd understand, but no.)I'm very demoralized. . Lonely and scared even though I've had CD for 40+ years, I still worry.Help.
 
Dodo1953, Thanks for sharing. Sorry hubby isn't supporting you. I'm blessed with great support system. I'm suppose to start Entyvio soon if the ins. issues get cleared up. I'm not reading anything positive about it :( What is enytvio-exhausted ? Did you have a Flu shot ? Praying you feel better soon.
 
Dodo1953, Thanks for sharing. Sorry hubby isn't supporting you. I'm blessed with great support system. I'm suppose to start Entyvio soon if the ins. issues get cleared up. I'm not reading anything positive about it :( What is enytvio-exhausted ? Did you have a Flu shot ? Praying you feel better soon.
I have been on Entyvio since August. It works for me. But a scope will determine that. I was "flaring" badly all fall, but it turned out to be an undiagnosed stricture. Pathology showed no active disease or inflammation. I had a resection Nov 30 with a temp ileostomy.

I get the support I need from these forums and various facebook groups, as members have experienced what we are going through. Not that hubby & family aren't supportive, but they really have no clue what is happening with our bodies, and have idea of the fear we experience daily.

I am struggling today with a diagnosed peristomal pyoderma on Friday. I hate having to wait until Monday for appts to deal with it. ER will be useless. I hurt when I move, and I am scared of what is coming in treatment options. I know my support for this will only come from those who have gone through it. We all need to be here for each other. xoxo
 
I have been on Entyvio since August. It works for me. But a scope will determine that. I was "flaring" badly all fall, but it turned out to be an undiagnosed stricture. Pathology showed no active disease or inflammation. I had a resection Nov 30 with a temp ileostomy.

I get the support I need from these forums and various facebook groups, as members have experienced what we are going through. Not that hubby & family aren't supportive, but they really have no clue what is happening with our bodies, and have idea of the fear we experience daily.

I am struggling today with a diagnosed peristomal pyoderma on Friday. I hate having to wait until Monday for appts to deal with it. ER will be useless. I hurt when I move, and I am scared of what is coming in treatment options. I know my support for this will only come from those who have gone through it. We all need to be here for each other. xoxo
Hi EastCoast, thanks for your response. I totally agree while I have support at home John has NO clue on the day to day struggles partly because how does one even explain it where others can understand ? You can't only those of us living it can understand. Praying for relief for you. I totally get the ER thing.... Waste of time for they are clueless. I came off Humira in April of 2016 do to side effects and went downhill from there dropped to 85 lbs. spent 5 days in hospital over the new year. Active Crohn's found in the small int. Waiting for Entyvio. How long before you noticed a positive change after starting Entyvio? I am so glad I found this forum ! Because as you said we all need to be here for each other. Take care
 
I was just diagnosed Dec 2015. I started a high loading humira trial in march which did not work. They switched me to Entyvio in August. I felt in my gut that it was working and wanted to give it 6 months as it isn't a fast working drug. I just felt it was working- not sure why. There is a great facebook group with a section on success stories "Entyvio Warriors". I hope I am allowed to post that here. Forgiveness instead of permission...:) It's a great group with the closed feature so doesn't show up in your profile. Very active. Good luck.
 
I was just diagnosed Dec 2015. I started a high loading humira trial in march which did not work. They switched me to Entyvio in August. I felt in my gut that it was working and wanted to give it 6 months as it isn't a fast working drug. I just felt it was working- not sure why. There is a great facebook group with a section on success stories "Entyvio Warriors". I hope I am allowed to post that here. Forgiveness instead of permission...:) It's a great group with the closed feature so doesn't show up in your profile. Very active. Good luck.
Thanks East coast, I will check out the FB group right now. :cool:
 
Location
Australia
Third infusion on Sat. Slept for 16 hours afterwards.
Three days later - I think I've turned a corner. I actually feel better. My flare is starting to subside. I'm feeling very hopeful. I just have to get through the Pred taper.
Fingers crossed I'm on the mend. It feels a bit exciting. Eek!
 
Third infusion on Sat. Slept for 16 hours afterwards.
Three days later - I think I've turned a corner. I actually feel better. My flare is starting to subside. I'm feeling very hopeful. I just have to get through the Pred taper.
Fingers crossed I'm on the mend. It feels a bit exciting. Eek!
So Happy you are feeling Better ! Thanks for sharing your update it gives me hope. I get my first infusion Friday. I must say I'm nervous and excited at the same time, worried about side effects. My Enteral feeding seems to be helping I was 85lbs. on 12/30/16 and this morning up to 102 lbs. I finally broke the 100 lb. mark. Praying you continue to thrive and achieve total remission.
 
Hello. I haven't posted here before but have been reading this forum since starting Entyvio. I am 40 years old and have had crohn's for 24 years. I have 180 cm of bowel left and Entyvio is my last hope, as I have been on all the other drugs and had some bad reactions to the TNF's and am no longer able to take those. I have also tried many, many things and spent lots of money, trying alternative treatments.

I had my 3rd Entyvio infusion on this past Friday. I am on Prednisone, 30 mg and Imuran, 100 mg. Since Friday, I have had horrible back aches and really bad abdominal pain. Everytime I eat, my stomach seems to fill up so quickly and I feel very full and my stomach becomes distended. This is followed by gas pain and lots of bloating. :0(

We live in Illinois and I have a local GI here, though he is not much help and I would love to change Dr.s. However, I am also seen by a terrific Dr at Mayo Clinic in Minnesota, who is simply terrific so we travel up there for appointments, tests, etc. I have my Dr. here only because someone local has to order the infusion of the Entyvio.

Last week, I noticed some balance problems and have been having major mood swings and brain fog. I have noticed this since starting the Entyvio and it seems to be getting progressively worse. However, I am also on the prednisone so it is hard to tell what med is causing which symptoms. I went to a Dr. last week because of my balance issues and mood swings and he immediately decided (after only reading about Entyvio right before he walked into see me), that I could have PML. I was referred to the local E.R. and went the next day and had an MRI of my brain. Again, the Dr.'s there also knew nothing about the Entyvio....I even had to spell it and tell them about it. My MRI showed no PML, according to the ER Doctor but Mayo saw a copy of it and said that there are some other things that they would like to invstigate further, but assured me that they did not think it was PML either. My Dr. at Mayo told my husband and I when we were there for tests this past August that she feels that Entyvio is safer than Remicade, in her opinion and that there is not a "real" risk of PML. We trust her, completely, which is why I decided to take the drug.

But now, this pain is horrible.....I think that I would rather be going to the restroom 15 plus times a day again, like I was last week. The change has been very quick and now the isssue is that I am passing small amounts (pieces, if you will), of formed stool. I also have a slight fever.

During my visit in August, Mayo saw that I have more narrowing and they told me that surgery was probably in my near future but with the small amount of bowel that I have, that we should wait until it was completely necessary and the hope was that the Entyvio would help and I wouldn't need surgery.

It is strange to me, but my gas and bloating symptoms have gotten much worse since I started the Entyvio. It is almost like the Entyvio has caused more inflammation to occur......though I am not an expert. I just know that I feel progressively worse, after each dose. I am frustrated and feeling quite hopeless. I was wondering if there were others who may have experienced this and what your thoughts were. I am not sure what they next plan would be for me. I am nervous about having another surgery, even though I have a terrific surgeon at Mayo and he would be doing strictureoplasties (spelling I know is wrong).

Thanks for listening.

Amy
Hi Amy,

I'm not sure if I have any answers for you but your story resinated with me so I thought I would share mine with you. I might mention that I have never written on any forum before and rarely read them either but I am searching for answers so I thought it worth a bash.

I am 45 and was diagnosed when I was 17. I have had multiple surgeries and am now at the point where the next will be a permenant ileostomy. I have had an ileostomy twice. Between the ages of 24 and 29 and then again for another year when I was 41. I have other resections as well. As for medication I have tried a lot. I have unfortunately been allergic to a lot of the treatments. I tried infliximab for a while before developing drug induced lupus (that lasted for almost a year) I then had success with Humira for about 8 years but then it wore of I guess. I have been on cortisone since being diagnosed and am now dependent. Currently I am on 10mg daily which is ok. Besides Entyvio all other drugs I take are for side effects of Entyvio. Inderal for headaches/migraines.

So I am now up to infusion number 4. I wish I could say its really helping but its not yet. My GI specialist (who I a super happy with and have been with for 20 years) has told me that it takes up to 14 weeks to work and even then it may just not be the right fit for me.

I have suffered with terrible stomach pain. Bloating and reflux. After my second infusion I had a terrible bleed and had to call the ambulance and go to emergency. The bleeding was contained after 24 hours and I stayed in hospital for a week. I had colonoscopy, gastroscopy, ct scans and MRI and numerous blood tests. Final answer was the crohns ulcers in my stomach (it spread to my stomach approx 10 years ago and flairs intermittently but was under control prior to starting Entyvio) had bled. I am now on Nexium for the next few months which has helped the stomach symptoms considerably.

My next infusion is next week. I do think that the last week has seen some change. I have been able to eat a better range of fruit and veg without to many repercussions. Mostly I have noticed that I feel a bit better. Stronger I guess.

You mention that it has effected your moods. I have noticed that I am more uptight then normal. ( I am normally relaxed ) I have also been teary. I am not usually teary. I have wondered if it is the drug or not.

I hope you are feeling a wee bit better.

Thanks for sharing.

Annette
 
Hi everyone,
l am new to this group. I have had Crohns, Lupus and RA since 2006. Have gone through every biologic and they eventually stop working. I am starting Entyvio in the next couple of weeks. I read about the JC Virus and PML. How soon do they test for the virus? Is it after you have started Entyvio? Nice to be in a group that has the same concerns and pitfalls I do:)
 
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Hi everyone,
l am new to this group. I have had Crohns, Lupus and RA since 2006. Have gone through every biologic and they eventually stop working. I am starting Entyvio in the next couple of weeks. I read about the JC Virus and PML. How soon do they test for the virus? Is it after you have started Entyvio? Nice to be in a group that has the same concerns and pitfalls I do:)
I've been on Entyvio since August, no testing for PML as the risk is minimal and simply indicated as a rare possibility. Something to do with it not crossing the blood barrier...I have some other support groups (noted above) that cover all aspects of Entyvio use. I found this forum a bit too quiet on details. That being said, it appears that most noted side effects are similar to other biologics, however I have had none.

It takes longer to work, but I felt it was working for me. I had undiagnosed strictures that were causing what we thought were flares. I had emergency surgery 2 months ago, so am in surgical remission. Pathology showed no inflammation or active disease. Best of luck.. :dusty:
 
Well, so much for Entyvio.Didn't make it to the 3rd loading dose. Horrible adverse reactions which will last until the drug is finally out of my body (half life is not an easy concept)which should take around 75 days according to pharmacologist I consulted. Headaches,soupy cough, lower stomach pain, constant nausea, inability to eat (leading to weight loss which is NOT GOOD), fatigue.I've basically slept away most of the last 2 weeks-this is going to take a long time to come back from, and I'm quite depressed about if. I did my research on this drug, read the trials, looked at the stats, thought I had a decent chance.Nope.Quite an education, not the result I hoped for.I hope it works for others, but it sure made a mess of me!
 
Hi everyone,
I had my first IV Infusion on the 23rd of this month. It only took half hour but it took an hour for the VA Pharmacy to bring the medication to the IV Unit so unusual for most probably on time.

There was burning at the IV site just like when I would give Humira shot, which I no longer take. I did get some joint pain but I have that a lot so hard to say how much worse it is yet. I have my second loading dose on 6th of Feb and will update any changes.

Keeping my fingers crossed that this is the one that works.
 
Hi everyone,
I had my first IV Infusion on the 23rd of this month. It only took half hour but it took an hour for the VA Pharmacy to bring the medication to the IV Unit so unusual for most probably on time.

There was burning at the IV site just like when I would give Humira shot, which I no longer take. I did get some joint pain but I have that a lot so hard to say how much worse it is yet. I have my second loading dose on 6th of Feb and will update any changes.

Keeping my fingers crossed that this is the one that works.
I have my 6th tomorrow. They normally need 20 minutes minimum to mix the drug, which they don't start until you get there, and sometimes until after you are hooked up. I have no side effects that I can say are because of Entyvio- anything I have I had before. Normal old age aches & pains.
 
Hi everyone. I am new to the Entyvio Club. After a battle with the insurance company I am moving from Humira to Entyvio. My change is not due to Humira failing, it is due to the insurance company not covering weekly injections.

The same insurance company has to approve Entyvio, but they have indicated in several letters they would approve it. I really hope Entyvio proves to be as successful as Humira was for 5 and a half years.
 
Been a rough week. Have been in the hospital with crohn's flare and c-diff. Back on 60 mlg. of pred and vancomycin for the c-diff. Was on cimzia, but bad crohns flare so now gastro looking at entyvio. My body feels exhausted and my brain sluggish. Feels like I could sleep for days, but can't sleep. Anybody else feel like this?
 
Hi everyone
Been a rough week. Have been in the hospital for crohn's flare and c-diff. I am back up to 60 mg of pred and vancomycin for the c-diff. I was taking cimzia injections for nearly a year, but last colonoscopy showed inflammation. Gastro now wanting me on entyvio. Dr. gives me morphine injections for my crohns. Do any of you receive morphine for your pain or is there something else that works?
 
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