(If you’ve taken Entyvio / 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 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:
Submit your review
After a severe flare this spring, I was put on the dual therapy of Xeljanz and Entyvio. I had developed antibodies to Remicade and Humira. I lost a LOT of hair previously with both Remicade and Humira. I was hoping it wouldn't be the case with Entyvio, however, the loading doses caused light hair loss, and the 4th infusion led to significant hair loss. I have probably lost 90% of my hair. I do not recommend Entyvio.
I have been on Entyvio since mid 2016 so three years on total. Before this I had unsuccessfully been on Asacol followed by Remicade and with Prednisone when flaring was bad and calprotectine levels high. Entyvio has worked well. I get infusions every 8 weeks and combine it with the SCD diet. I wouldn't say my stools are normal but I get by fine and have no blood in the stool. I have been in remission for about half a year judging by the calprotectine levels measured in the stool. I do not seem to have any side effects from Entyvio. As others have said it did take a while to take effect (if I recall it correctly about 3 months).
I was on remicade and built antibodies unfortunately. I started entyvio 16 MAY and had 2nd does 30 MAY. I hate this drug. Yes, I can tell my insides are doing well but that could have been from the remicade but the side effects of this entyvio are too much for me. I have a tender throat when I breath in or bend over, I have bad muscle weakness and shakiness in legs and arms, my anxiety has worsened, I have started to have bad dreams and dreaming in black and white when most the time I dream in color...that is when I don't have insomnia from this. I feel like I am in a fog but it's the muscle stuff that is really bothering me. I want off this med and see my doc on 24 JUN before my 3rd dose on 27 JUN. I want off all biologics but with remicade I only had some skin issues. This stuff which is supposed to be gut specific is messing with me worse than anything I have ever used. I don't want to do it anymore. Glad others get well and don't have side effects but it's been horrible since the first dose for me.
Used it for 8 months... no help...
This coming September(2019) I will have been getting Entyvio infusions for two years. It has kept my symptoms in remission with few exceptions. It takes longer to work than Humira but,Humira stopped working after a year of injections where Entyvio is staying the course. After some experimentation I have eliminated gluten from my diet so that may be a factor as well.
After trying just about everything else and being in a severe flare for 16.months,my consultant put me on this drug. Within two infusions, I was significantly better both from a Ulcerative Colitis and general wellbeing viewpoint, the relief was fantastic. I have to take prednisolone for another autoimmune problem, EPGA, but prednisolone never helped with my UC. I have been on Vedolizumab for 18 months now.
From a gut perspective, I have my life back, a recent flexible Sigmoidoscope showed that I am in remission and I can leave the house without fear. Side effects have been few, I still get tired for around a day after the infusion but that is nothing in comparison to the delights of UC. The length of effectiveness between infusions can and does vary a little, sometimes no issues, other times after about 6.5 to 7 weeks frequency and urgency increases a little but never any blood. I am happy to live with this.
The consultant has no intention of stopping this drug currently, which I am very grateful for, as I am that the NHS granted funding for its use.
For me, Vedo and I'm not overstating this, has been a life saver.
I didn't want to take Entyvio but a really bad, long flare led me to taking it. It has worked well so far (2.5 years). I combine it with 4 Lialda/day. I haven't had major side effects, primarily fatigue the day or two after infusion, plus increased anxiety. And it's expensive as all get out.
I have been on Entyvio for about two years and it kicked me into remission right away. It’s been working beautifully along with Azathioprine daily. I have little to no symptoms of UC and can eat a fairly regular diet, with a few exceptions.
After over twenty years all of the drugs on the list and many more I was given Vedolizamab two years ago. What a difference. I don't have many side effects and colitis can be forgotten.
I have sore joints especially in the morning but at nearly 70 maybe that is not drug related. After years of being overweight on prednisolone I have lost nearly two stones. I feel better and more energetic. Most importantly I can make plans , and buy advance tickets with confidence.
I can't have the lost twenty years back but this drug has given me my life back.
After failing with Remicade, Humira, Prednisone, etc. I was hospitalized in 2014 preparation for a colectomy. The nurse practitioner on my case went to bat for me and convinced the VA to make me the first patient to get Vedolizumab (Entyvio). It worked spectacularly well combined with the SCD diet and I have been in remission ever since. My last colonoscopy showed it to be clear and healthy,
After 6 months no help
I have had moderate to severe UC for 6 years and have run the gamut through Mezavant, Imuran, prednisone (which works but has the several side effects and is dangerous long term) a couple of others and most recently Humira. I have been on Entyvio for a bit more than a year every 8 weeks, and we decided to up the dosage, as it helped with hardening the stool, but did not eliminate the urgency. Takeda use to allow every 6 weeks as the next injection increment, but has stopped that and so we had to go with every 4 weeks, which I am on my second dose. I know it is helping, but would be most wanting to get rid of the urgency. I am convinced if I went with a very strict SCD diet I could likely take care of the urgency, as I am mostly SCD, but do stay into a bit of sugar and gluten and some illegal starches. I really wish we had more studies on diet, I do agree with Adam and many of you that diet is a key to helping with this disease. Good luck everyone
I've had ulcerative colitis since early 2013 and have been receiving vedolizumab infusions for about 20 months.
Vedolizumab has been an absolute lifesaver for me. I'm in complete remission and have no side effects. I did experience some generalised joint pain for the first 10 months or so but this has now faded and I feel fine.
Prior to vedolizumab I'd had very bad reactions to previous medications including a lups like reaction to infliximab infusions after about 8 months.
Vedolizumab has given me back my life.
ENTYVIO IS THE DEVIL
PERIOD!! IT MAKES U HYPER DEPRESSED
AND ITS ONLY GONNA GET WORSE!!
I was prescribed Vedulizumab after severed Colitis caused by the fact that Inflizimab stopped working as I grew antibodies.
I must say that I have been feeling fantastic, never had a relapse and felt really like I was normal again. In addition, apart from feeling fatigued the first few infusions I felt wonderful. I do suffer from Arthritis and the drug did make my joints sore, but I combat this by keeping active at the gym and regularly visit a Physio.
After a Flexible Sigmoidoscopy a few weeks ago, the specialist was thrilled with the results, as the ulcerations healed beyond expectations.
Sadly for this reason, they want to stop administering the drug, as it is too expensive. It looks like a contradiction to me, since we have proven that the drug works indeed and it would be insane to go back to where I was a year ago.
Has anyone got any feedback on how they felt after coming off Vedulizumab that they can share and give me hope please? Thank you.
I'll keep this nice and short. I was diagnosed with UC in 2013. For about two years I was on and off medication, mostly a combination of Uceris, Canasa, and Lialda. In May of this year, I was hospitalized for pancreatitis, with no conclusive results as to what had caused the episode.
To be safe, my new doc advised me to steer clear of mesalamine, as there is a correlation between the drug and pancreatitis in some individuals. He suggested that I look into biologics, specifically vedolizumab.
I have been receiving infusions of Entyvio for two months now, and I am THRILLED with its effect on my colitis thus far. The blood, urgency, and discomfort have subsided almost completely with no negative side effects. Although I am aware that this may change over time, and these results will differ depending on the individual, I highly recommend Entyvio. I am finally beginning to gain back some weight, I can eat without fear, and my overall quality of life has improved incredibly.
I have been in an up and down period of active flairs since 2011. Prior to that, I would go 5 to 8 years with no symptoms and basic treatments like prednisone, Asacol and hydrocortisone enema’s would clear things up. I started the SCD diet in 2012 with good results but never achieved full remission. In 2016, started Ucerus which improved my condition, but not completely. My doctor was concerned with the long-term effects of Ucerus, which is essentially prednisone, so he recommended Humira. At that time, I had been reading about Entyvio, and suggested it to my GI Doc and he agreed to give it a try.
I started infusions in March 2017, every 6 weeks initially and now on an 8 week interval. It was slow to work, but after 8 months, I can say I am significantly better. Not in complete remission, but all symptoms have improved significantly. Early on I experienced joint pain, and also injured my knee in a very low impact fall while skiing. The doctor at that time said loss of bone and cartilage from extended use of Ucerus may have contributed to the pain and weakness in my knees. He added a weekly dose of Methotrexate which may have helped some off the joint pain. I should mention I have also experienced periods of low energy and general malaise, but that may be due to UC, SCD diet and/ or the drug.
The problem is the expense! Based on general discussions with my GI Doc and information on the internet, I expected infusions would be about $5,000 and all costs to be covered by insurance. After 3 months, I was sent a bill for $24,000 for one infusion! I am now on the hook for $3,700 per infusion, (which I am fighting) so close to $20,000 a year, out-of-pocket. If I cannot negotiate this down, I may consider trying a biologic or going off Entyvio entirely and going on a pure SCD diet to see how things progress.
The point here is this: after 5 years I am now on a $28,000 treatment every 8 weeks and I am only marginally better than after one full year on a pure SCD diet and no drugs. Doing SCD 100% is almost impossible, but better than bad flairs and bad drugs.
I am interested to hear of people who have quit drugs and committed to SCD. How perfect are you on the diet? Can you have a beer or piece of bread from time to time? Some new research is suggesting the value of non-starch polysaccharides to gut health, so can that mean beer good, potatoes, not-so-much?
Love to hear any thoughts, suggestions…
Dx with crohns 2014 but actually suffered with it
3 years prior. Was on 6mp, prednisone which worked to a degree. On entyvio since August 2017. Feel normal again, just like I did back before the crohns curse hit me. Truly a miracle. I hope it never stops working.
I started entyvio last year after my body started rejecting Cimzia. I had a lot of joint pain in the beginning but it eventually subsided. I have progressively noticed a decreased function in both my thumbs. I am unsure if this is relatedness to the entyvio, but wanted to see if anyone else is experiencing the same symptoms after being on entyvio for awhile. I have been to a rheumatologist and had a X-rays and an emg, all of which returned normal results. Looking for some insight because I am unsure where to go from here.
Hi guys, just thought I would give my review on entyvio. I started it in September 2015 for my Crohn's disease after my azathioprine stopped working for me. After having a 15 month flare up, I was desperate. Was very worried about starting it as I was told that i was the first person in northern Ireland to be put on the drug, so if it worked well for me, it would be easier to get for other patients.
It did take a while for it to work, I would say a good 4/5 months for me to notice a big difference, but it worked great for me. No side effects or anything.
I was kept on it for 1 year until my funding ran out and then just continued with my azathioprine. But unfortunately in June this year my Crohn's started to flare up again and I was put on steroids. They worked for the 9 weeks, but again about a month ago my stomach got bad again and I'm being put back on the entyvio in the next few weeks. Not that i mind, as I know it works.
My advice to anyone trying it is, give it time. It's not an overnight solution.
Good luck to everyone reading this :) :)
I have UC and was diagnosed in July 2013. I started treatment with vedolizumab in May 2017 and am in complete remission. This is the best my colon has been since my symptoms first started in early 2013.
My response has been even better than with infliximab which I had to stop last year because of lupus like symptoms which appeared.
The vedolizumab has given me my life back. The only down side is joint pains but at the moment I feel it's a small price to pay. After a 4 year nightmare, I now feel completely well and all my UC sysptoms have gone.
All previous treatments caused severe reactions or illness. So far vedolizumab has been a life saver for me.
Hi Everyone - i haven't updated since Sept 2016.
Been on Entyvio since August 2016 w/ bi-monthly doses.
Saw my specialist this past week & following a scope in April have been told that I am in "clinical remission". :)
He is keeping me on the Entyvio infusions but taking me off azathioprine which I have been on since Jan 2015 (2.5yrs).
He has said that I am one of only a handful of patients who have responded to this treatment.
Being symptom-free for over a year is obviously good news & i've had no issues in that time inc no blood.
A bit concerned about coming off the azathioprine (no tapering).
The NHS is covering my treatment & he said if any issues i would go back onto azathioprine right away. He foresees me staying on this for at least another year.
Been on Entyvio for 6 months (and Pentasa). Still waiting for any noticeable results.
I'm following this forum for a while and I'd like to say it's very useful. Today I'd like to share my experience with entyvio. I was diagnosed with UC 15 years ago. Now I'm 30. For years been mostly on sulfasalazine and mesalamine pils and suppositories. Once during bad flare I had hydrocortizone suppositories, antybiotics and high dose sulfasalazine..this put me to remission for almost 3 years (drug free). 2013/14 all starts sulfasalazine helped to achieve quick remission. 2015 I got pregnant(low sulfa dosage during pregnancy)and I felt great. About 3 m after my daughter was born I start another flare (short before I was on antibiotic for bladder infection and I got food poisoning) Higher dose sulfa doesnt work, switch for asacol failure. I got really bad on the end of the year...the longest and worst flare ever. After colonoscopy my GI decide to put me on Entyvio. First dosage 1/31/17 I felt maby little better for coupe of days...second 2/14/17 no improvement...even worst...2/20/17 hospitalized (c.diff infection) 2 antibiotics + prednisone... after hospital slightly better...continue prednisone. 3/14/17 entyvio #3 prednisone 30mg/d. after 3/20/17 getting worst again...prednisone 40.. I decided to try SCD diet...after over 3 weeks on it i didnt see much improvement...still on modified scd...but I started drink cabbage juice(fresh cabbage+juicer) and do accupuncture...on next day I felt better...tapering prednisone slowly plus 5/8 another entyvio.
My son who is almost 16 years old and had tried Humira and Cortifoam for his UC for nearly 7 months, but the regimen wasn't working. We tried SCD but he lost too much weight. He started Entvyio in August and it took about 4 months to really kick in. The good news is he is now off all steroids for the first time in 18 months. We saw a Peds GI expert in Philadelphia who said Entyvio can take up to 6 months to work. He is now GI doctor #6! Glad we finally found someone who knows the latest science on meds and diet. My advice: Don't give up and find a GI doctor who will work with you until you identify a regimen that works. Thanks Adam for creating this wonderful community!
My son had crohns for 14 years no surgery except for this abscess. On and off all the meds and remicade worked for two years. Humera never worked. He has been on Entyvio for 2.5 years and has been crohns free for that time. He recently had an abscess (which the GI surgeon said can develop in days) and had to have it drained in the hospital 2 days overnight rocephine iv, flagyl iv then cepro and flagyl for 7 more days by mouth. He still has not be diagnosed with a crohns flare, but with all the antibiotics it may be inevitable. My question is does one of the side effects of Entyvio an abscess? I talked to the GI nurse Practitioner and she said it was weird that three GI patients had abscesses the same week. Anyone else? I have website: https://www.drugs.com/sfx/entyvio-side-effects.html
To Connie in Indiana; tell your doctor to hook you and your insurance company up with Entyvio Connect. In most cases the most you pay is $50.00. After your deductible you pay nothing
I've had severe UC for about 6 years, but none of the usual treatments worked. My gastro doctor put me on Entyvio infusions a year ago, and for many months there was little improvement on frequency and urgency, although blood in BM's lessened. But now, after a year, the Entyvio has kicked in brilliantly and I'm glad to say I'm in full remission. Entyvio can take up to a year to take full effect, but it's a wonderful drug for controlling UC.
So I got my 3rd dose last week. I was fearing another 10 days of post-dose fatigue but I had no issues this time.
My progress continues. Stability is maintained, no urgency. I am continuing w/ VSL#3 so again is it the Entyvio or the probiotic...?
I dunno. ..
I did have a scheduled meeting w/ a surgeon this past week covering the "what-ifs" & will meet w/ my specialist in a week or so to discuss the progress. I gather that Entyvio works w/ some people initially & then not so I look forward to discussing w/ him. Given the cost, if progress continues then I presume I will continue the treatment for the next while (every 8 weeks) but likely that the funding needs to be re-applied for yearly. The surgeon talked about how w/ biologicals like Entyvio that the long-term effect is unknown re cancers etc... Will update after Dose 4 in November.
I'm moving this up to 4 stars.
Also wanted to clarify a couple of points from previous post which I should have made more clear.
1) I have been diagnosed w/ UC since Feb 2015.
2) 3 years previously to that was told it was Eosinophilic Colitis.
3) Last steroids was Feb 16.
4) Was on Golimumab from Dec 15 to July 16.
I am pleased to say that I am doing really well since my first Entyvio dose. Coincidentally I have also been on VSL#3 since that time. So what is making the difference? The probiotic or the Entyvio? Very hard to say. I had a little bit of tummy pain this past week (healing?), very little gas & have been a bit constipated. Main thing however is the stability, lack of urgency maintained. Will update after Dose 3. As I am in the UK, I am very fortunate to be getting this via the NHS so it's costs me nothing. I spoke w/ an IBD nurse & this is one of the most expensive medications though. £2000.
So here's the deal...
Had been on Pentasa, Azathioprine, Prednisone finally tapering slowly off the steroids Feb 2016.
Started Golimumab in Dec 2016 through to last dose on July 1st. It MAY have helped but if so it took up to June but still had urgency, frequency & some blood.
Started Entyvio in early August & have just had Dose 2 w/ Dose 3 coming early Sept.
SO far so good - symptoms like urgency AND frequency have gone. I have bowel movements in the morning & at night & that's about it so I'm feeling positive.
I need this to work as my specialist has told me the this would be the last frontier from a medical treatment point of view before surgery would be required.
What I would say is that a MAJOR fatigue has set in both mental but primarily physical. This sucks but hopefully this is also part of the healing process. It's a trade off & of course I'm willing to endure it if it will make me better but it is SIGNIFICANT.
Will keep you updated on my progress.
re: 'immune suppressant'.
I was told that this drug is different than the other biologicals (anti TNF drugs) used for UC. It is not an immune suppressant. It works by interfering with a key chemical step that is needed to create the GI inflammation process.
I have had 2 infusions so far (on Week #3 of Entyvio) and I'm not noticing anything dramatic, so I am giving it a 2/5 stars. I get another dose in a few weeks and then go to every 8 weeks. I am not noticing anything much so far except that I think my stools have less blood and are some are more formed than before. I have failed Prednisone and Azathioprine (Imuran) so far and switched to an *IBD only* GI doctor who does IBD research so that I could get infusions of SOMETHING. He has arranged for me to get essentially free ENTYVIO while I am in his study. I am told it can take until 14 weeks to see the benefits of this drug. NB #1 I would really recommend getting with a researcher in order to get free meds, for those with no insurance.
NB #2 An Entyvio infusion here in Toronto costs $3K, BTW, not $28K as some American friends are mentioning!) If you can come over the border 6x/year, it might be worth it for you. :)
I have tried most of the products for uc last one was golimulab absolute waste of time always reverted to prednislone which had some effect but not 100% now had 3 infusions of entiviyo difference is unbelievable gone from 20+ visits to the toilet a day down to 2-3 a day massive improvement. Was diagnosed 4 years ago this has now given me some life back not always wondering where the nearest toilets are the lack of urgency is great. Think I have a few side effects couple of days of fatigue after the infusion and some joint pain but compared to the benefits negilible
I've had UC for 30 years and been at the point of ready to remove my colon several times. Like many others I've tried almost everything including : Sulfasalzine, prednisone, 6-MP, Asacol, Humira, etc. etc. including diets and had marginal success. 6-MP and Asacol seemed to work the best for the long term, but I always had inflammation shown with my annual colonoscopy. My Dr. put me on the biologics in an attempt to improve the inflammation. Humira and Sympony didn't work and had bad side effects for me. I started Entyvio 18 months ago and showed improvement quickly. For most of the duration I have been symptom free and was keeping my fingers crossed that this was the path to stay on into remission. Unfortunately I started a flare last week, something I haven't had in a long time. I have my annual colonoscopy in two days and will make the decision afterwards. Entyvio is kind of a last resort for me...if it doesn't work it is finally time to remove the colon...30 years is long enough! My quality of life on Entyvio was quite good. I did experience side effects early on until my body adjusted...which included hip and knee pain (I felt like a 90 year old man at times...not 40). The pain eventually subsided. Other than that, and the exorbitant cost of the medication...it was great while it lasted!!!!
On my 4th dose and so far so good. Within 1 week my symptoms lessened. I am having a lot of fatigue and sore muscles for the first 10days or so after each injection. Then quite good. Infusion much easier than pills every day. Hope this keeps working!
My 15 year old will be starting entyvio tomorrow after remicade not working for him. Just curious if anyone has a child who has been put on this drug and what your experience was. Thanks!
I just started the Entyvio treatments 2 weeks ago. So far so good. Just wondering about the weight gain & bloating? Is this a left over side effect from the Predisone that I finished 3 weeks ago? Very good luck to everyone....
My name is Kenny i been battling Uc for 23 years. I have taken every medicine they have the kast 5 years i had a tough time staying in remission. last March i started Entyvio every 8 weeks after the w doses u get in the first2 weeks. I was worried of all uncertainties of this Entyvio infusion. I took anyway my side effects were pretty rough .....tired ..headaches ...forgetfulness was concerning . I had remission for 1 year and Im ill again. I have the feeling the only way to feel better is the removal of my intestines its hard to accept but it has been mentioned. I go next for a colonoscopy and prepping while your sick really takes it toll on someone. I read an artcle that most of us eventually have to our intestines removed at some point . 23 years of this works on you. I wish you all well. Thanks Kenny
I started Entyvio 10 months ago. It really worked well at the beginning after the loading doses but I started a pretty bad flare 3 months ago and even after most recent treatment, it hasn't worked. My doctor put me on imuran to see if that combo would help but I had bad reaction to the imuran. I have been on uceris oral and asacol for years. Going to try uceris foam with it all next. I have been on Remicade, lialda, pentasa, canasa and of course the dreaded prednisone more than I care to have been. I have been diagnosed for 9 years. I am hopeful I can get past this flare because the Entyvio made a huge difference for a while and I hope it will work again.
I am sitting here receiving my sixth infusion of Vedulizumab and I am one of the lucky ones. I started last April following a week of hospitalization due to severe blood and weight loss. The drug took over the heavy lifting as I transitioned off steroids and I have been gradually getting better over time. They wanted to remove my colon in April because they thought it was beyond repair but it is slowly healing. Between the Vedulizumab and strict adherence to the SCD diet, I am back to a normal life. Before this drug, I failed on Remicade, Humira, Mesalamine and Mercaptopurune.
Entyvio is working very well for me. My quality of life is back with only 1 to 2 BMs (firm) daily, some days none at all. I was diagnosed with UC September 2012. In the first year I lost 26 pounds. With Entyvio, I have gained back about 6 pounds (in 5 months) and feel healthier than I have for years. I do a lot of research on UC and other diseases that affect me or my family. I have taken all the regular anti-inflammatory meds for my UC. Nothing really helped except Prednisone, of course, but we all know the negatives of that drug. This year, I was in a major flare for months, 16-18 BMs per day and lots of blood passed. I had tapered down from Prednisone to none the week before I started the Entyvio infusion on 6/15/15. My doctor had wanted me to try Humira or Remicade, but I didn't like the side affects. I had found Entyvio information on the Internet and brought it to my GI's attention. He was aware of it, but did not have any of his patients on it yet. At this point, I think he was just happy that I would agree to a treatment other than Prednisone. He also wanted me to take Imuran at the same time, but that didn't happen. Currently I am only on Entyvio (infusion every 8 weeks), and probiotics.
As of yesterday, I took my 5th infusion. It is working very well for me. From my first infusion, 6/15/15, it took about a 3 to 4 weeks for my BM's to be half of where I started, down to about 8-9 per day. The bloody stools stopped 1 week after the first infusion. I did run a slight fever everyday with occasional headaches for about a month after I started the Entyvio, that was temporary. By my 3rd infusion (7/29/15), I was down to 2 BM's per day. And, as my doctor says, they were formed and firm (beautiful). This treatment has worked for me and I would highly recommend it for those suffering with flares. Entyvio does state that it is for "active" UC. I think that means being in a flare, which I was and it worked. I don't know if that is why it doesn't work for some. I also think it may work better when not on any other medication, which I was not. At the infusion center, there are now about 10-12 others in various stages of the Entyvio infusions and all of them are reporting some level of improvement in their UC issues. I try to eat healthy with mostly vegetables, fruit, chicken and seafood, rarely red meat. I also only drink electrolyte enhanced water. I walk 30 minutes a day. I am scheduled for a sigmoidoscopy in December. My doctor wants to “look” at my colon. I know it will look better than he expects. My sister prays for a ‘cure’ for me every day and with Entyvio I think it’s as close as it will get to that. I know UC is such an ‘individual’ disease and everyone is different, but maybe this will work for you too. I am fortunate to have a wonderful husband and family/friends that care. Their support and understanding of this disease helps me to be strong. I hope this is helpful and I wish you all the best with controlling your UC.
Hello, I am currently on my 2 dose of Vedolizumab / Entyvio. I haven't noticed any improvements yet unfortunately and still on a high dose of prednisilone which i have been on for over 2 years. I can't seem to taper down further than 20mg which is driving me crazy as the side effects are horrible. Before trying vedolizumab i was on Remicade which didn't work, Im also on azathioprine which i have been taking for over 5 years and Pentasa.
Im getting nervous if the Vedolizumab doesn't work then the doctors have spoken about surgery and whenever I think about it i get panic attacks!!
I have been reading up on the SCD diet reviews and i try to stick to a very low carb no gluten diet, but after being ill for so long ( was hospitalised at the beginning of the year) i think a little of everything in moderation does the mind good. Esp if i need a large vodka on friday night to forget about this awful disease!
Look forward to hearing other reviews on the vedolizumab drug and if anyone lives in London with UC and and fancies meeting up let me know!
Have been approved for Entyvio, but was told each dose costs $28000+......I do have "marketplace" insurance, but cannot risk having an infusion, then getting a bill that I can't afford. Anyone willing to divulge how much they are charged, after insurance?
This stuff worked like a miracle to me. Previously on Humira for a year and a half, I found that it did not work effectively anymore. Entyvio saved me. I started in December of 2014 and have been on it ever since. As patient with UC since 2012, I have never felt so "normal" since I was diagnosed and I have been on my share of medications. I did make an entire YouTube video about my experience and with information on Entyvio on my channel that I use to share my journey with this disease. Hope it can help those considering this medication. And no, I'm sponsored by Entyvio to make this video or post. This is simply my opinion and I am receiving no compensation for my videos.
It didn't work - in fact, I ended up with diverticulitis!! 5 times hospitalized since starting Entyvio in March (4 months)- never hospitalized for it before. That being said, Asacol caused kidney failure, Remicade caused liver disease, palindromic rheumatism and psoriasis, tacrolimus caused temp. blindness so I am seeing surgeon in 2 days - I can't do meds! Also, the joint pain was not worth it - could not walk. I think it is me not the drug - I would definitely try every drug out there.
This med did nothing for me but cost me a lot of money. Nothing really works for me except prednisone and tincture of opium. When people write their reviews please be honest and tell all what you are doing in addition to taking a med like Entyvio. When I was reading reviews sometimes people fail to say oh I am also doing SCD or GAPS or supplements or also Asacol etc. and you get to the bottom and in addition have a big list of other things they are doing or fail to mention them.
I was diagnosed with UC two and a half years ago. I tried Asacal and Humiria at first to no avail. After spending a week in the hospital on steroids, my doctor started treating me with Remicade. Remicade worked for approximately 3-months and then my symptoms returned. I also had a lot of side effects, including half of my hair falling out. I then tried following the SCD diet which helped my symptoms some; however, since I work long hours and don't like to cook my weight dropped dramatically. I dropped down to 96 pounds on my 5'4 body frame and I had little to no energy. My doctor recommended that I try entyvio. After three infusions - I've gained weight, am able to travel without starving myself, started playing sports again and am able to sleep without waking up 5 times to go to the bathroom. While I still have some blood and urgency, my symptoms have improved by 75%. I feel like I have my life back and hope the entyvio continues to work longterm.
So far it's been 10ish months since I've started entyvio. I have been symptom free for about 6 months and no sign of active disease woth last colonscopy. My favorite part of the drug is that I am not catching everyone's sicknesses anymore and have even become less of a germ - phone freak (well, still a germ phobe, just less of the freak status.) The first 5ish infusions came with a lot of joint pain, but not anymore. The biggest advice I could offer someone who was getting ready to start is: HYDRATE BEFORE INFUSION. it lessons the side effects.
I've done a number of different meds including Remicade, 6-MP, Asacol, Humira and others. All of these have caused problems with my immune systems causing breakouts of Pyoderma Gangrenousum on my legs and other issues. I have finished my loading and now doing every 8 weeks for Entyvio and my markers have come down significantly and feeling incredibly better. It is much more expensive but I think very much worth the extra $$$. Things have been very dark for me over the last several years with different meds, but this Entyvio is making life enjoyable again.
After failures with remicade, symponi, assorted other drugs and a one week stint in the hospital; I was approved for entyvio last October. It took a while to kick in but I must say that I feel better than I have felt in 20 years. I do have some issues with joint pain and my eyes because this drug selectively targets the bowels, but it is mild due to the previous suffering with UC. Give it a try!
I have had UC for more than 10 years. After a couple of doses I am almost in remission. This is the best medicine I ever took.
I was on Remicade for years and my body finally became immune. I got everything back.... blood,cramping....it was very upsetting. The good news was that Vedolizumab was just around the corner. It had just been approved and I've had 5 or 6 infusions with it and I'm back to complete remission. I feel better on this than when I was on Remicade. If your in trouble with Remicade and it isn't working try this, it has done wonders for me.
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.
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
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!
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.