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New Ulcerative Colitis Medication: “Vedolizumab” the Integrin Antagonist

(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.

Then you have other drugs like Humira and Remicade which may have been described as “Biologics”.

Anyways, Vedolizumab is part of the (or starting since I have not heard of any others yet) “Integrin Antagonist” class.

What’s New with 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:

Click here to submit your review.


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Vedolizumab immune suppresant medication for ulcerative colitis SKU UPC Model

Just started...

Jun 27, 2014 by Anabel
City/country:: Boise, ID 

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.


Vedolizumab

May 20, 2014 by April Lavoie-Legrand

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.


4.0 5.0 2 2 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 to Vedolizumab

Tags: Vedolizumab





76 Responses to “New Ulcerative Colitis Medication: “Vedolizumab” the Integrin Antagonist”

  1. bevAugust 22, 2013 at 3:05 pm #

    Adam!!

    I just watched this on the Canadian news last night…very interesting…I wonder if there are side effects, and what the long term safeness might be. Too soon to tell, I guess.

    The guy on the news last night who is taking this new drug said that he was still feeling totally normal after 14 months, with no symptoms, and no side effects. I was pretty jacked, to say the least…

    I suppose time will tell.

    Thank you for everything,
    Bev

    • AdamAugust 22, 2013 at 8:18 pm #

      You be for sure right, we’ll have to wait and see how all turns out.

      HOpeufully it works for many upon many though!!

      • Tony .MNovember 16, 2013 at 5:12 pm #

        Hi Adam, Do you know if this medication is or will be available in Australia??? Where
        can I find out more information about it as I have a child who has Crohns

        • AdamNovember 17, 2013 at 4:56 am #

          HI Tony,

          I don’t know about the current availability in Australia. But, best bet would be to contact your local GI doctor, and inquire with them. I would hope they would be able to assist you right away.

          (Also, be sure to find the company’s website online who manufactures the product, as there are often different “brand” names used in countries which vary from place to place)

          best to you,

          Adam

  2. bevAugust 22, 2013 at 3:05 pm #

    …oh, and it won’t be available in Canada for one to two years, apparently….

  3. MattSeptember 8, 2013 at 7:47 pm #

    My doctors are very excited about this new drug. They said it will change the face of UC. I’m not as optimistic but I hope they are right. My doc says the side effects are close to 0! What?! They claim it will be out in March 2014. 1 of the many trails are being done here in Chicago.

    • bevSeptember 9, 2013 at 5:51 am #

      Zero side effects would be great! I hope this is true…I still think FTs…(good bacteria) is the real way to knock UC into remission. No drugs is my wish and goal for the future of treating UC!!

      Cheers all :)

  4. MattSeptember 15, 2013 at 1:04 am #

    Bev I feel the same! FT has to be the way. I tried it at home and it didn’t take, I’m hoping this is more acceptable in the medical community very soon. I’m seeking a different donor

    Cheers
    Matt

    • bevSeptember 15, 2013 at 8:31 am #

      Let’s hope it’s soon, Matt.

      Any idea why the FTs didn’t ‘take’? Were enough of them done? It’s different for everyone. Some people need more than others. Also, you said you may need a different donor? I never considered that before, but perhaps some people do carry and have more good bacteria than others? This is all so interesting…and complex…

  5. amyNovember 9, 2013 at 1:14 pm #

    I want to try this medication!! Anyone know if the FDA approved it yet. According to what I read, i believe it’s been submitted for review (sitting on a desk somewhere at the fda).
    regarding FT’s – they now have a new way of introducing the bacteria into the body – pill/capsule form (i know it sounds gross, just dont think about it lol)

  6. ColNovember 9, 2013 at 4:31 pm #

    Amy,
    It’s up for FDA review on December 9 of this year. It’s been given priority status. And it looks like the name might change to Entyvio. Here’s hoping it’s everything they’re saying it is!

  7. M. GonzalezFebruary 6, 2014 at 5:21 pm #

    What drug are you talking about?

    • AdamFebruary 6, 2014 at 7:12 pm #

      it’s called: Vedolizumab

      • M. GonzalezFebruary 6, 2014 at 8:13 pm #

        Thanks. I am on Remicade. Feeling better but having side effects like allergies and fatigue. I read that this new drug could be more dangerous to people that are taking Remicade or Humira. Do you have information about it?

        • AdamFebruary 6, 2014 at 8:17 pm #

          No, I’m sorry I don’t

  8. RickMarch 15, 2014 at 7:24 am #

    Diagnosed with distal UC in 2010, and have had one serious flare that landed me in the hospital for a week last year, due to an allergic reaction to colozel. I’ve been on no medications and have largely followed the specific carbohydrate diet. Still, I have bad periods that restrict my lifestyle. A drug that promises to work with minimal side effects would be one I’d be willing to try.

  9. ChrisMay 21, 2014 at 10:58 am #

    Looks like the FDA approved it.
    http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm398065.htm

  10. Jeff VybihalMay 23, 2014 at 12:40 pm #

    Next question is how soon we can get it. I’m at wit send with my colitis. I’ve tried it all including humira.

    • AdamMay 23, 2014 at 5:30 pm #

      Hey Jeff,

      I’d ask your GI and see what he/she says. I wouldn’t be surprised if its just a prescription away.

      • JeffMay 23, 2014 at 5:50 pm #

        I’m a little nervous to be trying such a new medication but the trial results look comforting.

        • AdamMay 23, 2014 at 5:56 pm #

          We just watched Dallas Buyers Club last night. (great movie) but after my experience trying humira before it was approved for UC, and the movie…I can for sure understand the nervousness and I’m sure you’re not the only one. You might want to try and contact the woman who’s name is listed as the media contact on the FDA release link that was included in the newsletter emaiil today. She might be able to provide you with some more detailed info on side effects from the trial population.

          • RickMay 24, 2014 at 5:20 am #

            In case anyone was going to try, this was the auto-response from the media contact:

            I will not be checking email regularly. If your message is urgent, please contact the FDA Office of Media Affairs at 301-796-4540, or fdaoma@fda.hhs.gov for assistance.

          • AdamMay 24, 2014 at 7:20 am #

            thx for giving that a try and the update Rick. Maybe a phone call to them would be a better route to get some more details on this new med.

  11. KimberlyMay 23, 2014 at 12:57 pm #

    I am on Sulfasalazine and it makes my UC bearable, but I am still very easy to flare up. Joint pain all the time. I am on Sulfasalazine because I have no health insurance and it’s the most cost efficient for me. Was on Asacol HD for 2 years, it was so expensive I halved the dose and ended up in the hospital almost septic from a bad flare… What’s the average cost per dose of Vedolizumab?

  12. RickyMay 23, 2014 at 2:15 pm #

    Just emailed my DR’s office and will see if I can get on this. Balsalazide is getting old.

  13. RickMay 23, 2014 at 5:54 pm #

    I have an appointment in two weeks with my doctor regarding this medication. I’ve been able to control the gut issues (more or less) with diet but the side effects (inflammation of joints, asymmetrical arthritis) is becoming bad. The data looks highly promising.

  14. Ken ZiffMay 23, 2014 at 9:50 pm #

    Excited about the FDA approval for Vedolizumab. Can’t wait to try it!

  15. HEATHEN HOLIDAYMay 23, 2014 at 11:45 pm #

    This sounds great, however, I would like to know how long this medicine stays in your system after just the first (one) dose. After having that nearly deadly reaction to Remicade and being bed ridden for over 6 weeks last year, I am scared to take meds that stay in your system more than 24 hours.

    • MaggieMay 24, 2014 at 9:20 am #

      Heather, Cimzia is the biologic that sent me to the hospital. Humira gave me MS type side-effects/symptoms so I’m very nervous about trying a new injectable drug, too, but I think I am going to try this. Been flaring for about 3 months and just got out of being really sick for nearly 3 weeks. I’m taking sulfasalazine now, have an appointment with my gastro in June and will talk to him about the new drug. I am going to remain hopeful. I also take a lot of supplements and I can’t say anything really helps me. If the new med doesn’t help, I will finally consider a colectomy, I can’t continue to go through life like this!

  16. JamieMay 24, 2014 at 5:09 am #

    This new drug looks interesting! I have UC for 5 years now. I had a FMT done by a doctor. I had c-diff so I was able to get it professionally. Thank goodness to this site I found my new doctor that believes in alternative ways to heal other than drugs. He actually believes in the SCD diet.

    I was so relieved to find a doctor that listens to me. I thought I might be able to go gluten free and eat some of those yummy starches after the FMT. Well, it didn’t work although I can get away with it on occasion, but I am sure my insides know it. I have a very stressful job and can work up to 50 hours and above and have been able to stay in remission for years with a few bumps when going off diet.

    I like to have all the guns on my side. Meaning, I follow the SCD diet, I smoke e-cigarettes for the nicotine ~ yes nicotine has helped me a lot. I did not want to smoke cigarettes so I went to the e-cigarettes. I understand this only helps those who have not smoked before. I take L-Gutamine, IgG2000 DF, now 30 billion CFU Probiotic Daily DF (down from 100 billion after FMT), afraid to give up my Apriso (down to taking 2 per day from 4 per day after FMT) went off diet and had warning signs back on Apriso 4 per day. I would not say the FMT was all cure, but helped.

    After my almost flare and saw a little blood. Went back on a strict SCD diet and took my Apriso up 2 more. Honestly, not really sure at this point if the Apriso is really helping, but afraid to change anything. I am under an enormous amount of stress and I just go in the morning between 1 and 3 times for years now.

    So, this is my up to date story. Always looking ahead to what I may need to do or new drug to take. Looking a surgery and the bag, I am unsure. My question is do you have the bag forever or do they do reconstructive surgery to place that inside some how? Just want all the information I can have so I can make educated decisions through the UC journey.

    I hope what has helped me can help someone else.

    Cheers!
    Jamie

  17. rashmiMay 25, 2014 at 11:26 pm #

    can i get this drug(Vedolizumab) in india?

    • AdamMay 26, 2014 at 10:27 pm #

      Rashmi,
      I’m not sure. Maybe someone else knows on that. But, either way, you’re going to need a prescription, so talk with a gastro doctor out there and they should be on top of this new med and its availability for you too.

    • RamSeptember 5, 2014 at 2:22 am #

      Hi rashmi

      Did you check if this is available in india ?

      Ram

  18. Lynn WrightMay 27, 2014 at 12:59 pm #

    Hi Adam,
    I get a kick out of your videos and enjoy the support from all the postings. I am am RN who has cared for children/teens who are dealing with IBD. Never did I think I would end up with it too! I was Dx’ d at 42!!!
    I have been dealing w/ UC for a little over 4 years(had a period of remission for 6-7mo in ’13) flared in fall, but things are improving with diet and the addition of 2 medical food supplements. EnteraGam and VSL#3 probiotics. I’ve had some redux in blood & frequency after using for 2-3 weeks. My GI does plan to start me on Entyvio(Vediluzimab) as my next go to treatment.
    I have done Lialda and Imuran for most of my illness. Remicade for 1 year , but continued to bleed. Would love to get closer to a normal life, not quite ther yet! I would encourage other UCers to try the Vedoluzimab as it is more “gut Specific”. Ask to receive premedication prior to infusion( diphenhydramine & acetaminophen ) to reduce reactions.
    Continued strength to all who suffer from this dreadful disease!

    • AdamMay 27, 2014 at 8:09 pm #

      Thanks Lynn, and glad you’re enjoying the site. It’s such a new med, but I think over some more time we’ll have quite a few reviews on Vedolizumab as well. Time will tell,

      Best of luck to you,
      Adam

    • AvitalSeptember 1, 2014 at 9:27 am #

      Hi Lynn,
      Have questions as I read your post.
      I’ve had UC for the past 17 years, steroid dependent, was in prednisone and asacol and colazal, but nothing but prednisone has helped. Then went on budesonide, mild stetoid, had beast ca and developed adrenal insufficiency after budesonide became systemic.
      As I’m coming off budesonide I was put on Lialda, but top gun GI, have me diarrhea and faring itis big time, so I decided to decrease and finally stopped all meds!!
      Terribly scared to go with out them!
      Was also recommended EnteraGam, question, how do you like it, does it help?! VSL3, is that helping you?
      Since I had cancer, I’m terrified of biological meds….
      Horrible desease!

  19. henaJune 6, 2014 at 5:40 am #

    please keep updating about this medicine

  20. BeccaJune 11, 2014 at 11:19 am #

    I have had UC since I was 9 and I am 26, none of the drugs work. Remicade has now ruined my liver and stopped working so surgery is where we are at until NOW. Now I plan to ask about this drug at my appointment in a few weeks (if I make it til then without going to the er) This is hopeful. I donot want a bag!

  21. Elinor ThompsonJune 12, 2014 at 8:50 pm #

    Had colonoscopy today (my 36th as I have had 1 a year since diagnosed) and doc told me he wants to put me on Entyvio and oral methotrexate. I have been on SCD for 2 1/2 years with great improvement after a severe hospitalized attack , developed 100% antibodies to Remacaide with lots of side effects, and developed RA after getting off Remacaide.
    Entyvio sounds promising since it targets the gut with little side effects to other parts of your body which sounds good to me. Seems like in addition to UC , doc seems to think I may have Crohns as well. Even though I feel fine, I have low iron ( get iron infusions) because I have small amounts of bleeding all the time from a part of my colon that is moderately to severely ulcerated and the other parts are almost normal. Really don’t want to take methotrexate but wondered if anyone else took these two drugs together. Will let you know how I do on Entyvio.

    • AdamJune 12, 2014 at 9:34 pm #

      Good luck Elinor on Entyvio, let us know how goes:)

  22. Larry FJuly 10, 2014 at 8:17 am #

    I just started my first Vedolizumab treatment yesterday. I will post a review up top after my 3rd treatment. I was the 4th person to receive this medication so far at the University of Penn here in Philadelphia (they just started last week). The treatment takes about 45 min to an hour, but I got pre-meds (steroid infusion, tylenol) so mine was more like an hour and a half. The pre-meds were used because of a past reaction I had on remicade (even though it’s a totally different infusion drug).

    The drug is similar to Tysabri, but it only targets the lining of the gut which reduces the PML effect greatly. They still have to put the PML warning on paper and make you sign off, but so far there has been no reports of PML in over 3000 subjects. My first infusion went fine and so far no immediate side effects. My next one is scheduled for 2 weeks from now and then 4 weeks after that. At that point is when I should definitely see serious progress.

    I am already feeling a little better the day after the infusion, but I have also been on another relatively new drug “UCERIS” for about 10 days now and I think that is helping some too. I am slowly tapering down on prednisone and I’m at 12.5mg heading down to 10mg in 3 days. Just to compare I was going to the bathroom about 9-10x a day 2-3 weeks ago with occassional blood and constant bad diarrhea. I was taking about 2 vicodin a day for pain when needed. I am down to 3 to 4 trips daily now and today started to see formation of stool again (and taking less pain meds). My diet has been pretty SCD compliant with the exception of white rice which has been a miracle for me since adding it back in. Everybody is different in this department and it usually depends on what the root cause of your disease is (and no one exact diet is perfect for everyone).

    I have suffered with UC (pancolitis) now for 12 years (diagnosed at 18 and changed to crohns/colitis 5 years ago due to a fistula and minor stricturing) and my GI wants to remove my entire colon (bag me forever) if I don’t get my symptons under control. So here is hoping to diet and hopefully some revlutionary medicine in vedolizumab! The only drug that has ever helped me in the past has been prednisone before now. I have taken Asacol (pancreatitis reaction), Sulfasalizine, 6mp, Imuran, Methotrexate, Humira, Remicade (delayed allergic reaction) and Cimzia all with no success. That made me a perfect candidate for Vedolizumab (Entyvio).

    My supplements I am currently on include:
    SCD Multivitamin, Pantethine (Jarrow Formulas), Green Vibrance (when diarrhea is subsided some), Glutamine, NOW Candida Support, Garden of Life Probiotics, Vitamin D-3, Carlson Cod Liver Oil & NOW 100% Whey Protein Isolate.

    • Jeff V.July 12, 2014 at 7:18 am #

      Thanks for the detail Larry. I’m about to start this medication myself. Been on pretty much every drug such as 5 asa, tons of prednisone, 6mp, humira. Also tried things like diet, acupuncture and even medicinal marijuana! Excited about the potential of this new drug. Not too concerned of the PML risk because as you said there were no reports in the trials. Good luck with the treatment. Let me know how it goes. Hopefully I will start it this summer!

    • JulieAugust 16, 2014 at 5:35 pm #

      How are you doing now? Has the Vedolizumab helped? I hope so, because they might put my son on it.
      Hope to hear from you.
      jseberry@bellsouth.net

  23. David AllisonJuly 11, 2014 at 1:18 pm #

    Been battling with UC for 2 years now. Allergic to the 5ASA’s so my Dr cleared me for Entyvio this week. Hopefully have my first infusion in a few weeks. Hoping to hear back from the other folks that have recently started. Keeping our fingers crossed for all of us.

    David
    Boise, ID

  24. KenJuly 30, 2014 at 12:27 pm #

    I will receive my 2nd Entyvio infusion tomorrow. Had the 1st one 2 weeks ago. Next infusion in 4 weeks (following the recommended schedule of weeks 0, 2,6 and then every 8 weeks thereafter.) Doc advised that no change will be noticeable until after 3rd infusion at the earliest…….I’ll keep you posted!

  25. RickJuly 30, 2014 at 2:14 pm #

    So many questions…

    I’m scheduled to receive the first infusion as soon as they get it in.

    Any side effects?
    What are your current symptoms?
    Did it take you long to get approval?
    What have you done prior to Entyvio?

    Thank you and best of luck with your treatment!

    • KenJuly 30, 2014 at 7:52 pm #

      I’ve had UC since 1982. Started on sulfasalazine and courses of prednisone for many years. Transitioned to Colazol around 1998 (?). Added 6 MP in 2006 which almost killed me. Did great for years on 6mp, but the sh@t hit the fan in 2012….turned out that my GI wasn’t monitoring labs closely enough for the 6mp. Destroyed my bone marrow and just about every other blood level possible. Platelets went off of the chart. Ended up in hospital for 3 weeks as a result. Within 36 hours, UC was the least of my probs. I developed blood clots and bleeding on my brain and behind sinuses. With blood thinners (prob for life) the clots and bleeding cleared up in about 2 months. In the process, one of my optic nerves got fried and caused double vision for 6 months. Started remicade mid 2012. A waste of time for me. Went on to methotrexate weekly injections for a few months and then Xeljanz & Uceris after that. Had decent success with Xeljanz and Uceris. Doc then added Tacrolimus to the Xeljanz/Uceris regimen. Hoping that Entyvio is the answer. Tapering Tacrolimus now. Will taper Uceris after tomorrow. Cutting Xeljanz doseage by 1/2 too. Wish me luck!

  26. David AllisonJuly 30, 2014 at 2:17 pm #

    Thanks Ken! Good luck.

  27. Jeroen The NetherlandsJuly 31, 2014 at 1:02 pm #

    Hi there everyone, had my second infusion last thursday. 3rd one is 19th of August. Still lots of mucus blood (9 times a day) .. Ulcerative colitis….. Hopes this is gonna be our miracle drug guys… There’s nothing else left. Steroids, tnf alfa… Nothing works anymore.

    Keep you posted!!!

    Greetings from Holland

    Jeroen

    • Ken ZiffAugust 1, 2014 at 1:42 am #

      Best of luck to you, I hope it’s the answer!

  28. RickJuly 31, 2014 at 2:13 pm #

    Wow. I thought I had it rough with a one week hospital stay (allergic reaction to Imuran).

    Just got a call from my doctor’s office. The insurance company has rescinded their approval of Entyvio because I haven’t tried Remicade yet. Apparently, they feel I have to use every possible UC med before they’ll approve it.

    Yeah, I was pissed.

    • Ken ZiffAugust 1, 2014 at 1:43 am #

      I’d suggest having your doc appeal to the insurance company. All ins companies have a peer to peer review system. Good luck.

  29. RickAugust 1, 2014 at 3:45 am #

    He did that late yesterday, so now it’s under review (again). They aren’t very hopeful. I’m calling today and if nothing else happens, I’ll be able to voice my opinion.

  30. Larry FAugust 2, 2014 at 3:43 am #

    Just wanted to update everyone on my Entyvio progress. I had my 2nd infusion treatment last Wednesday July 23rd and my 3rd treatment will be on August 20th.

    My bloodwork before receiving my 2nd treatment showed elevated white blood cell count of 14.1 (up from 8.6 before the first treatment). My Doctor called me after the 2nd treatment to see how I as feeling because of the bloodwork and I told him a little low on energy but nothing out of the normal. Well the out of the normal happened about 2-3 hours after the call when I started feeling like the flu was hitting me (weakness was the first sign).

    Turns out that Upper Respiratory infection is pretty common side effect in the early stages. I ended up with a sore throat, some weakness for a couple days, and swollen glands (never any fever though) . Some other side effects that came on were pain in my knees that comes and goes and headaches. Important to note that I had to go back up on my prednisone to 15mg a day and I usually get headaches just from that so that is probably not Entyvio related or maybe even just a combination of both.

    The fact that I was on prednisone when starting only increased my chances for infection since it is an immunosuppressant. Anyway the sore throat slowly got better and now after about a week (with no antibiotics) I’d say it’s still slowly going away on it’s own. I’m not going to take antibiotics unless it gets worse and so far it’s only gotten better.

    As far as side effects go this isn’t too big of a deal I suppose. I will know when I get my bloodwork done again in a few weeks if everything is fine. The elevated white blood cell count was very likely due to the infection. If I notice any other side effects I will update again on this thread.

    For me I only seem to be getting better SLOWLY as each week passes. As I said in my last post I am on Prednisone and UCERIS as well. I have been on the UCERIS for 30 days now and the prednisone I will be tapering down to 12.5mg tomorrow. I was down to 7.5mg, but when you have been on it as long as I have you have to increase the dose when you get sick since my body isn’t making cortisol on it’s own yet. The dose was not increased due to anything with my colitis/crohns.

    Good luck to the others getting the treatment and I hope you don’t suffer the side effects like I did. But if you do just know that these are common side effects with the treatment: “Common side effects include common cold, headache, joint pain, nausea, fever, infections of the nose and throat, tiredness, cough, bronchitis, flu, back pain, rash, itching, sinus infection, throat pain, and pain in extremities.”

    As I said was at a greater risk for infection being on the prednisone since it is a strong immunosuppressant, but doc forgot to mention that to me before starting. All in all it’s not that big of a deal and more than worth it if I continue to get better and go into remission. As another poster said the biggest progress is usually seen after the 3rd treatment. I believe the prednisone and UCERIS helped my gut start healing some. Before starting UCERIS and Entyvio I was using the bathroom 9-10x a day with some blood/mucus and just straight “D”. Now I am rarely seeing “D” and soft stools are the norm with about 3-5 bowel movements a day. I am very happy with that progress but the urgency can still be a factor which I hope will go away as I continue to get better.

    As noted before I have Pancolitis (entire colon and rectum) later changed to crohns/colitis about 4-5 years ago due to a fistula in ano and signs of a stricture that isn’t bad at all (basically they don’t know or I just have both in large intestine). My prometheus lab work showed 92% Ulcerative Colitis.

    Hope this information helps!

    • HeidiSeptember 9, 2014 at 5:08 pm #

      Larry,
      thanks or sharing your experience with this new drug. I have been using Remicade for 2 years, fairly unsuccessfully and I am thinking it might be time to change docs and was hoping to find out who your doc is at Penn, and how many people are receiving this drug now at Penn? thanks for any help you can offer.
      Heidi

  31. Jeroen NetherlandsAugust 2, 2014 at 7:30 am #

    Hi there UC’ers,

    As i Told in my above post my stools were still 9 times a day (mucus blood diarrhea). Im in week 3 of vedolizumab infusion (getting the third the 19th of August) Since two days my stools are 4 to 5 times a day. (Still diarrhea and mucus but not that much anymore) Hope This progress continues.

    Keep you updated and post in a week!

    Jeroen

  32. KenAugust 7, 2014 at 8:26 am #

    My 3rd infusion is scheduled for August 28. Hoping for some progress after that. My GI ordered up a stool test for me, Calprotectin, as she advised that it’s the best way to monitor the inflamation in IBD. I just dropped off my “samples” to the lab this AM. I’ll keep you posted! I am off of 1 drug, Tacrolimus. Will be tapering the Uceris after the 3rd infusion. Once off of Uceris, I’m supposed to cut my doseage of Xeljanz in half.

  33. JulieAugust 16, 2014 at 5:40 pm #

    Thankful for this site.

  34. mirzaAugust 26, 2014 at 5:46 am #

    thanks all please keep posting , also let me know if any thread is going on for
    LDN for colitis

  35. David AllisonSeptember 22, 2014 at 10:27 am #

    Going in for my first infusion today. Nervous in general, but really excited. Anyone else have updates on their progress?

    • KenSeptember 22, 2014 at 7:17 pm #

      Good luck! My 4th infusion is on 10/23. No super progress yet…..no side effects from infusion. Keep us posted!

  36. JoanneOctober 12, 2014 at 12:06 am #

    Thank you for all of the updates on your infusions.
    I went to Mayo Clinic for a consult and they recommended Entyvio. My story is very similar to many who have posted on this thread…lots of meds, nothing works very long except prednisone. It has caused bone loss, eye problems, joint pain, low thyroid, etc. So , I think this is my last medication. My older brother had colon cancer and has been “bagged “for 17 years. He is encouraging me to have surgery to remove my colon and to get off the mediation train. He is concerned the meds are just killing me slowly.
    I am on the SCD, Mayo also mentioned FODMAP diet, probiotics ( SVL#3), exercise, a skin cancer check, and lots of immunizations ( due to Immuno- suppressant meds). So, I am meeting with a new GI this week and taking Mayo recommendations.
    BTW – I have a large 3 ring binder with all of my labs, CT scans, x-rays, meds, procedures, dvd’s, etc etc. As soon as I have anything done – I get a copy for my own records. I have dragged this with me to my trips the ER, 3 hospitalizations and every Doctors appt. It has saved me time and money, and stopped the medical people from doing / redoing a variety of tests.

    Please keep updating your experiences with Entyvio!!

  37. Chris from Massachusetts
    ChrisOctober 17, 2014 at 10:48 am #

    Hey Guys,

    I had my last loading dose 1 month ago. So my first maintenance dose is on Nov 14th When I got my first loading dose I was admitted to the hospital I was in such bad shape.

    They upped my Prednisone to 25 MG which killed the flare. I have been tapering down ever since and have not seen any blood at all. That is after 2 years of seeing blood daily. I am down to 10 Milligrams. I can’t say 100% yet obviously if it is mostly the prednisone or mostly the Entyvio. All I can say is there has been no return of symptoms while tapering (and believe me I have been on 10 MG of pred before and had symptoms – that is why I am excited.). On top of all that I really haven’t been very strict about my diet – which would definitely be a big No No in the past. I haven’t gone crazy (i still stay away from Salads and raw vegetables and Lactose), but for the most part I have eaten anything I want.

    I am crossing my fingers that this progress continues. It is really weird after being sick for so long to poop once a day and see no blood.

    Pray for me guys that it continues! – Thanks

    Chris
    P.S. – other medications: 150 Milligrams of Imuran.

    • JoanneOctober 20, 2014 at 8:09 am #

      Hi Chris, so you are getting the Entyvio infusions and you are also taking oral Imuran? Are they giving you prednisone with the infusions? I was told by my Dr. that my first infusion of Entyvio would include 40 mg of prednisone to reduce the possibility of a negative reaction to the Entyvio. This really worries me.
      I am currently on 25 mg of prednisone along with Azathioprine 150 mg. As far as colitis symptoms – I am “symptom free”, but the side effects are terrible. So, I am tapering off the prednisone and will have another scope Nov 4th to see what is going on ( they are now concerned I have both Crones and UC, along with CMV, and fighting off CDif).
      Part of me wants to chuck all the meds but after 30 days in the hospital and falling under 115 lbs I will do the scary meds for now. Part of me allowing another scope is to make sure I am a good candidate for surgery if needed.

      Please keep posting your experience with this med- I really appreciate what you are posting!
      Joanne

      • Chris from Massachusetts
        ChrisOctober 20, 2014 at 3:30 pm #

        Hi Joanne,

        I will be glad to keep posting. My thoughts and prayers go out to you.

        To answer your questions I am taking oral Imuran. Three 50 MG pills a day. My doctor says 1 MG per pound so I am 150 pounds so 150 MGs. He said there was a chance that is wasn’t doing anything at all for my Colitis, but he recommends I take it because he thinks it will help keep the Entyvio effective over the long term. I trust him and this is a serious disease so I am not taking any chances.

        They are NOT giving me prednisone because of the infusions. I was in such rough shape leading up to my first infusion that they bumped up my prednisone to 25 MGs to kill the flare. But it had nothing to do with the infusion. I had very very minor joint pain the day of my first infusion. Absolutely no Entyvio side effects since that first day (even on the days I have gone for follow up infusions).

        Obviously there can be adverse reactions to any new drug you take. They monitored me very closely during the first infusion to make sure I did not have any. In fact the Nurse was scared to give me a new drug because I was so weak from constant flare ups. She was relieved to hear that I was being admitted that day (because the flare was so bad) so they could continue to monitor me throughout the night for any adverse reactions.

        I am sorry to hear you might have C-Diff and/or CMV. My doctor is continually monitoring my stools to make sure I do not have C-Diff as well (I have never heard him check for CMV but it could be something he is monitoring as well). Obviously the symptoms can be similar to my Colitis and we would not be able to tell if the Entyvio is working if I had it. As far as I have been told it is impossible to have both Colitis and Crohn’s. Crohn’s can be misdiagnosed as Colitis, but you either have one or the other.

        The side effects from Prednisone are horrible. Thats why I am trying to get off it as soon as I can. You are not alone in your suffering from that medication. It sucks!!!! I will take Imuran and Entyvio any day over prednisone. I do not have any noticeable side effects from them so far as I can tell. Long term I am going to have my doctor check my blood work to make sure it does not cause bone marrow suppression. However aside from that Imuran has shown to be fairly safe long term (especially at the level you and I are taking it at). Entyvio has no long term data on it besides the Gemini trials – but from what I have read about it I am comfortable with its safety profile.

        I have been tapering off the prednisone slowly (5MG at each infusion) because I have heard that Entyvio takes a while to kick in. My doctor says from here on out we go down by 1 MG of Prednisone a week. We will monitor it very closely. He said if you achieve remission at 10 MG or 9 MG or 8 MG etc… and you cannot go any lower without flaring then we will keep you at those levels long term. He says that body produces 5 to 8 MGs naturally so at those levels the side effects are a lot less severe. He obviously wants to get me off it completely but he said if we cannot then it is better then being in a flare or getting off Entyvio only to find the other options less effective.

        So how am I doing right now? Well all I can say is everyday that passes I say to myself: OK when are my symptoms going to return? This doesn’t make any sense at all. I should be flaring right now. But they haven’t returned. It is a strange feeling after being sick for so long. I really am knocking on wood and hoping it continues. My doctor says that I may never be at 100% but if we can keep me at 90% – 95% like I am right now then he can live with that – as can I!

        My stools right now are semi-formed. No Blood. 1 to 3 times daily – mostly in the morning. Sometimes a little urgency, but nothing I can’t hold long enough to get to a bathroom.

        Truly wishing you get better Joanne. I will keep posting for you. Please keep me in your prayers as well as I do not consider myself out of the woods yet =)

        Chris

        • JoanneOctober 22, 2014 at 8:48 pm #

          Hi Chris,
          Thank you so much for the information and sharing all that you did. It seems that so far it is really working for you!!!
          I am keeping you in my prayers and in my hopes for wellness. I understand how you keep thinking that it may stop working. If our friends could see us craning our necks down towards the toilet water – they would be horrified. For us everyday w/o blood and formed stools is a miracle.
          Enjoy your health,
          Joanne

        • CarissaOctober 27, 2014 at 4:44 pm #

          Hi Chris,

          I wanted to check to see how you are feeling. I had my first loading dose of Entyvio today. I hope you are doing well.
          All the best,
          Carissa

          • Chris from Massachusetts
            ChrisOctober 29, 2014 at 5:38 pm #

            Hi Carissa!!

            I hope your first infusion went good. I know you were nervous about it. My first infusion I was in such bad shape I couldn’t wait for them to pump that stuff in me.

            I am still doing really good (1 stool a day in the morning). No Blood. I am down to 9 MG of Prednisone now.

            Sorry it has taken me so long before I got back to you but I wanted to be absolutely sure that a minor flare up I had passed before I responded.

            So like I mentioned I had a flare (About six stools over a 24 hour period w/ a very small amount of blood). The miracle part for me is that it went away as soon as I began watching my diet again. Like I mentioned in my previous post I do have trigger foods (Lactose, Starches, Raw Vegetables). Like I also mentioned I was eating whatever I wanted (for the most part) in whatever quantity I wanted since my first infusion. Diet has never been a cure for me, but I cannot deny that it plays a role in my UC.

            As soon as I had that flare I started eating my UC friendly foods again (Grape Juice, Meats, Lactose free dairy, certain nuts etc…). I was also very careful in the amount I ate and the way I ate. The flare was gone in 24 hours. I trying not to be too overconfident just yet, and I still cannot be 100% sure as to why I am in remission, but I almost cried when I saw that flare go away so quickly after being sick for so long.

            So if I could pass one bit of knowledge I gained on my journey with this new drug so far it is: Avoid your trigger foods if you have any.

            I continue to decrease my dosage of Prednisone. I start 8MG’s this Saturday.

            Chris

          • CarissaOctober 31, 2014 at 5:22 am #

            Hi Chris,

            Glad to hear you are doing better! My first dose wasn’t so bad. I am still at a high level of prednisone (50mg!) bc my flare has been so bad, but they will start slowly tapering me at my next infusion (11/11). I am really hoping this works and was actually relieved the moment the infusion started. I finally feel like I have something that may help me.

            I hope you continue to get better and will keep you posted on my progress. I know Entyvio is slow to work, but I hope and pray I see improvements. Especially bc I hate the prednisone! The side effects – moon face, mood swings, etc are horrible.
            All the best and I am so happy to hear about your progress!
            Carissa

  38. CarissaOctober 21, 2014 at 9:38 am #

    Hi. I am new here and wanted to see if anyone has experience with Enytvio and C diff. I was recently hospitalized for a severe colitis flare (a day before I was supposed to start Entyvio) and was diagnosed with C diff as well. I have been on a heavy dose of antibiotics (flagyl and vanco) and 50 mg of prednisone for the past 3 weeks. Yesterday my doctors retested for C diff and the results were negative, but I am still on antibiotics. They would like to start me on Entyvio Monday, along with keeping me on a low dose of vanco. I am really scared, as I’m not convinced the c diff is gone and also worry that there isn’t enough data on patients starting Entvyio with antibiotics and a recent C diff diagnosis. Any thoughts or advice would be appreciated.

    • Chris from Massachusetts
      ChrisOctober 22, 2014 at 10:40 am #

      Hi Carissa,

      I have never had C-Diff, but here are my two cents.

      My Doctor half jokingly said not to travel overseas (obviously warning me against travelers diarrhea). He said he could not be sure about what would happen to me if I got some sort of gut bacteria while taking Entyvio (it being such a new drug and all).

      That being said I feel a little more confident knowing that the IBD trials were the largest trials for any IBD medication ever (or so I have read). Something like 2000 people over a course of 2 years. I have got to believe that at one point they encountered someone with C-Diff who was on antibiotics. At the very least I would hope they factored it into their analysis of the drug before releasing it. If they didn’t I would be highly disappointed in the review process – It is a gut targeted medication after all.

      Chris

    • JoanneOctober 22, 2014 at 8:36 pm #

      Hi Carissa,
      I picked up CDif and CMV in the hospital and was given the same antibiotics as you. It was decided to keep me on prednisone and Azathioprine until I am done with the vencomycin and have another CDif test and a scope with biopsy to test for CMV. Mayo docotors told me that w/o a biopsy there is no way to know if the CMV is gone.

      If all is clear I will begin Entyvio.
      Thanks for posting!!
      Joanne

  39. CarissaOctober 22, 2014 at 1:24 pm #

    Hi Chris,

    Thanks for the response! I just met with my doctor and we are going to start my first dose on Monday. While a slight risk, he feels confident that with a low dose of antibiotics I will be fine and that the more important path right now is getting my colitis under control. We talked about remicade but given entyvio is so gut spefic, he believes it’s a better way to start. Here’s hoping!
    Hope you are doing better.
    Thanks!!
    Carissa

  40. CarissaOctober 23, 2014 at 5:30 am #

    Joanne,

    Thanks for the feedback! I feel for you. I tested negative for the CMV, but the C diff was positive. They have me on vanco and steroids right now, which seems to be doing very little. Of course, I am in the worse flare of my life, so maybe it is helping more than I think.

    As far as the C diff and the vanco, my doctors are testing again tomorrow for the c diff even though I am on the vanco. They believe that if it continues to be negative while on vanco, I can start the Entvyio. It certainly makes me nervous, but they claim I am in a catch 22 bc they need to move me to a biologic and want to do it as soon as possible. It doesn’t seem that they want to wait to get me off the vanco first for the c diff. Have your docs expressed concerns about being on vanco and entyvio at the same time??

    Thanks for responding. This is so hard to go through and helps when you know you aren’t alone.
    Carissa

    • JoanneOctober 30, 2014 at 8:05 pm #

      Carissa,

      I am getting the colonoscopy and biopsy Nov. 4th, then will meet with my doctor on Nov. 11th. On the 11th we will decide the course of treatment- which will include Entyvio. By that time I will be done with the Vancomycin and on only 10mg of Prednisone, 150 mg of Azathioprine. My concern is that he wants me on the Aza and Entyvio – but I do not want to do that . I am having lots of side effects which the doctor thinks is all due to the prednisone. I think the Aza contributes as well. I continue to use the SCD diet for 1 meal a day and drink Ensure Complete for 2 meals a day.
      The weird thing I am experiencing is cramping in my fingers and toes about 2 to 3 times per week.

      Is there a Spa for UC’ers where we can go have support, a cooking school to help us learn to cook the SCD way, Gluten free ( etc. ) , yoga and meditation ( etc). If someone has a place for this – I am going!

      How are you feeling??
      Joanne

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