(If you’ve taken Vedolizumab, please submit a “review” of your experience via the button at the bottom of this post:)
There has been some recent news breaking the airwaves/internet waves about some clinical study data which you may find impressive.
The name of the medication behind all the hype is Vedolizumab. Whether it’s marketing or not is up to you to decide, but many of the news articles and published studies are describing it as a “new class” or form of medicine. Take for example Colazal or Asacol, or Pentasa, those three medications might have been described by your doctors as being in the “5-ASA” class of drugs.
Anyways, Vedolizumab is part of the (or starting since I have not heard of any others yet) “Integrin Antagonist” class.
What’s New with Entyvio / Vedolizumab?
Below, please feel free to read as much as you like about this new medication, I’ve included several links to studies from PubMed which go into some nice details about Vedolizumab.
But generally speaking (and I’m sure some immunologists can take this WAY further), this medication is different from some other “immune suppressants” in that it does a much better job of targeting specific parts of the immune system related to the colon and ulcerative colitis symptoms. If you step back a minute and think of our bodies as a whole…well that’s a huge complex massively complicated group of many different systems working 24/7. Within our bodies we of course have our immune systems. And within our immune systems we different sub-systems. With UC, we often think of the inflammatory response. So, to simplify the thinking, lets assume that Vedolizumab does a better job at targeting specific parts of the inflammatory response compared to some other medications. (That is at least a major part of the marketing that Takeda which is a massive drug company is explaining to the FDA in hopes of gaining approval.)
So again, please do some more reading on this medication if you find it interesting. I’m not big into medications myself, but they are successful for many UC’ers and that’s what this info-share is all about.
Vedolizumab links you may find interesting:
• My favorite diagram showing how this is different & how the drug works: diagram picture
• New and emerging treatments for ulcerative colitis: a focus on vedolizumab – PubMed Free article
• Vedolizumab – Wikipedia link
• Vedolizumab for the treatment of ulcerative colitis and Crohn’s disease – Free PubMed article
If any of you have first hand experience with a clinical trial and would like to share a “review” of your use of Vedolizumab (assuming you did not receive the placebo…) feel free to add that below.
Takeda has stated that this is the world’s largest clinical trial for IBD EVER… And, it seems that a major goal of this medication is to come up with another immune suppresant related therapy which hopefully will have less side effects when compared to its peers. So whether or not your into western medicine, I think we can all agree that’s a nice goal to have.
Best of luck to all of you,
Submit Your Review of the Medication Here:
Entyvio is for real!
If it wasn't for Entyvio I would have been forced to have my lower intestine removed. I have ulcerative colitis and Krohns. My body became immune to remicade and I had been on everything else, so I was out of options. Before starting on Entyvio I was bleeding everyone I used the bathroom, which was about 6 times a day! I was experiencing tremendous abdominal pain and night sweats. I was the first person in my area to be approved for Entyvio. My hospital was very excited while I was sceptical. I honestly felt relief in 1 week!! If you are struggling with ulcerative colitis and think that you're out of options, you've got to try this medication. It works.
How long for this stuff to work?
I've had UC for 15 years. Been on Asocal, Remicaid, Prednisone, 6-MP, Canasa, Proctifoam, Humira, etc.
Currently on 6-MP, 6 mg prednisone tappering every week.
I went in for my 3 Entyvio dose 2 weeks ago.
I have shown some improvement but still have rectal pain and urgency with some solid movements, some loose, and at night many non productive trips to bathroom.
Outside of Jo, has anyone had success with Entyvio and how long did it take to see noticable improvements?
When I was on Humira it worked wonders for a year then stopped working as I got off prednisone.
I have had zero side effects from form Enyvio.
Just wish it worked quicker and better.
I had tried every medication evry diet program I could find I was in a constant flare for three years
My original Dr said there is no more I can do for you
I found another dr in the city who suggested Entyvio. Four treatments and I was still ill
He said it's time to talk about surgery
To get your life back. We gave it one more try
And it worked. I'm not in total remission but close to it and the best I've felt in years.
I am now being weaned off prednisone. I'm thankful that drug did a lot of damage to my body
I feel Entvyio has saved my life. Only down side so far is joint pains
Entyvio has set me free
Started on Entyvio in November 2014 and as of May 2015 I am in remission. I am following a paleo diet -- meat, fruits and veggies. I still have problems eating desserts, processed foods and alcohol. I controlled my UC with diet since 2002, but when I went out of remission for almost two years I had to break down and agree to meds. It was a hard decision but I chose Entyvio even though it is still in its experimental stage. It has finally SET ME FREE!! I also use Canasa suppositories when I cheat, like Mexican food, etc.
Diagnosed with UC 4 years ago and have not been able to get anything under control unless I stayed on Predisone. Tried everything--meds, diet, hollistic. The only thing that can keep the UC in check is Predisone at/above 20 mg. Had first Vedolizumab infusion on May 8. Hopeful. Actual infusion only takes 30 minutes...that was nice. Saw slight improvement after first infusion. Second infusion (2 weeks later) on May 22. Remaining hopeful for continued improvement. Experience joint pain, tiredness & headache. Not sure if these side effects are legacy from Remicaid since I went directly from that drug to Vedolizumab and experienced those symptoms while on Remicaid as well. Will update again after next infusion on June 19. Hopeful that this will be the silver bullet medication. Hopeful.
So far things have gone well with Entyvio. I'm still Loading and will start regular (8weeks) infusions after my last load in a month. I've done Remicade but it caused my legs to break out (pyoderma gangrenosum) and the last time I had an infection and had to stop and then reload. On the reload I had a bad reaction that almost sent me to the hospital.
The Humira wasn't much better and the legs started to get worse.
Now with a new Dr and Entyvio. It seems to be going fine. The legs are not as bad.
The unfortunate thing is throughout this the polyps are more and more every colonoscopy. They have used the term "Squamous Like". Ugh!
The Entyvio does give me a bit of a headache the day after but that might just be some stress plus other fun things in life.
It is still early in the process, but I went for my 2nd infusion of entyvio last Monday. I have not seen anything significant but it is still early. I am a little discouraged, however. Being on an immunosuppressant drug has increased the chances of picking up every sickness/infection around me… and as a high school teacher this is not the best case scenerio. I was diagnosed with shingles and had to go to the ER three days after my 2nd infusion. Being a 26 year old with shingles is not what I had in mind when starting the infusions. Hoping it helps my UC symptoms in the long run!
One week after my first infusion I started to notice mild improvement. I'll be going for my first maintenance dose (#4) May 20th and I've been continuing to see slow, steady improvement from that first week. After my infusions I'm generally pretty tired for the first few days but then I feel fine after that. After the first few infusions I had a headache for two or three days as well. NO OTHER side effects!!!! I finally have my life back!
Something is working well
I have had 4 infusions and it did not appear to be working. I then had a biopsy of my descending colon and it showed I had CMV. After completing a course of antiviral meds the blood, cramping, rectal pain, joint pain and frequent BMs have all stopped over the past 5 days. I am continuing on a prednisone taper (now at 25 mg), Azathioprine 150 mg, SCD and probiotics. Still a bunch of meds but no blood in the stool and BMs is a good thing.
How are others on this thread doing who have been on Entyvio?
After some trial and error with Humira and Entyvio (more on that later) I was approved for and had my first infusion of Entyvio on February 17. The infusion process was painless and took a half hour for the actual infusion, and another half hour for observation.
My UC has presented itself with inflammatory arthritis. No urgent bowel issues, no bloody stool or mucous, but in the course of five months I've gone from active to sedentary, feeling lucky to even be able to walk. I can't make a fist and my right knee and two of my finger joints are shot.
The Humira did nothing so we tried Enbrel (which is an arthritis drug). Also nothing. I have been on courses of Medrol (steroid) just to be marginally functional.
I pushed for Entyvio before it was even FDA approved, but I had to run through a few biologics first.
I've done a ton of my own research and it makes sense to me to quelling the UC in the gut should reduce the ancillary symptoms.
All of us taking Entyvio are the guinea pigs, so there isn't a lot of support out there. I am the only one in my area on this drug. I was the first, and it’s sort of lonely being patient zero.
This support group is as close as any of us will get to talking with other Entyvio patients, so if we could all share our experiences, maybe we won't feel so isolated.
Cost is a factor in getting this prescribed. I’ll know more when I get my monthly statement from my healthcare provider, but the rumor around the infusion office was $38,000 per dose. They approved for the loading dose (3 infusions) and one maintenance dose. Fourteen weeks. If there is no improvement, the drug will no longer be considered an option.. This is standard practice from Entyvio.
I spoke with the medical department at Entyvio, and nobody has been using this for over a year. Long term usage would get ridiculously expensive, so my thoughts are that it will either come down or it will be a short term fix.
I'll keep you posted if anything changes.
Going for my 4th infusion tomorrow
I can't really give a review yet, because I just started the drug on Monday, June 23, 2014. I can say that the infusion was simple and I even got to rest for the 45 minutes it took to be infused. My next infusion is at the 2 week mark on July 7, 2014 and then at the six week mark on August 4, 2014. After that, if I am showing improvement, I will be getting the infusions every 8 weeks. Wish me luck! And I'll keep you updated.
I have been on Vedolizumab for 7 months now. When I started on the medication( in shot form) I was in severe ulcerative colitis conditions , I had been on prednisone for 5 years strait and started getting cushions disease. I had all the terrible side effects and my body was fighting itself. I was in dire need of a miracle. My doctors were ready to throw in the towel and give me a Bag. I refused. I immediately started doing research on meds. Got hooked up with Dr. Feaghan in London Ontario Canada. He said he could help me. I was sceptic at that point. But I was all in. Had nothing to Lose. I was 34 years old and had ulcerative colitis for 23 years and was exhausted and tried everything out there. I thought well whats one more medication. So I started the shots. The next shot was in 2 weeks. Then I had a shot every 4 weeks after that. Well after 2 months I went from a severe ulcerative state to nothing but a spot the size of a dime. No bleeding, no accidents, no urge, no pain. Less arthritis even. It was a miracle. I was at an inflammation point of 9 out 10 in my body. I am now at a 1. It has saved my life.... I thank Dr.Feaghan and this miracle drug. All other meds gave me a high chance of getting sick all the time, in the hospital for just a common cold and all kinds of stuff. In 7 months I got sick once with a sinus infection, had antibiotics and was back to work in a few days. No hospital. I tell you, this has saved me and my kids lives.... I am so happy to have been in this study and helped a lot of sufferers find this medication that works Only in the area it is suppose to work. Not the whole system., Just the Gut. And its awesome!! Highly recommend.