Generic Name: Vedolizumab for Ulcerative Colitis (vedolizumab)
Vedolizumab for Ulcerative Colitis Reviews
Entyvio (vedolizumab) "I was diagnosed with Ulcerative Colitis (UC) in 2003. I landed myself in the hospital during my initial diagnosis, for 1 month. Remicade saved me, but the side effects were awful. Stopped that and was in remission for 15 years. I had a flare in April 2020. I ended up in the hospital during this pandemic. Good times! Anyway, started taking prednisone and my gastro put me on Entyvio. I've had 3 infusions since May 2020 and I'm due for my next infusion in September, but I don't know if I can handle these side effects? My UC is under control, but at what cost? I just turned 40, I'm very active and would consider myself fairly fit/strong. I can barely walk after sitting for 5 minutes. My ankles swell up, my joints hurt to the bone. I'm so exhausted ALL THE TIME. I'm also a teacher and I will be starting back up with school in a few weeks. I can't imagine being on my feet all day. Does anyone else experience this level of joint pain on Entyvio?"
Entyvio (vedolizumab) "Entyvio was prescribed for my 8-year-old son who was diagnosed with UC a little over a year ago. We have tried mesalamine, Remicade, Humira, budesonide, enemas, prednisone, GAPS/SCD diet. Mesalamine helped for a very short time, as did prednisone. My son is a primary non-responder to both Remicade and Humira. He’s been hospitalized twice since diagnosis, and his UC became much worse over the last 6 months. He was given Entyvio off-label as it’s not typically prescribed for children. So far, it has been a miracle drug for my child. After his second infusion, he is so much better. He has energy, a good appetite, and much less frequency. We can actually leave the house again for longer than 30 minutes. His only side effect so far is chronic runny/stuffy nose, though he had this with both Remicade and Humira. He also suffered horrible migraines with previous biologics, none so far with Entyvio."
Entyvio (vedolizumab) "I was on a dual therapy of Entyvio and Xeljanz. I noticed slight hair shedding during the 3 loading doses of Entyvio. The day after the 4th dose, I started losing a TON of hair. Eight weeks later, I have lost almost 90% of my hair and am looking into hair extensions/wigs. I experienced hair loss with both Remicade and Humira, but not to this extent. Hair loss should be listed as a side effect. I am discontinuing Entyvio and am hoping it will be completely out of my system soon. Has anyone else experienced significant hair loss? When did it stop/grow back??"
Entyvio (vedolizumab) "I’ve had UC for 37 years. I’ve been on Entyvio for 12 months. I chose to stop due to the debilitating side effects. I am in remission now, however, the side effects are not worth it. After my first infusion, I felt I was having a heart attack. The EMTs said my heart was fine, but I was close to having a stroke. Cortisone injections eliminated this symptom. Over 8 treatments, I developed severe bone and joint pain, some hair loss, major skin dryness and bruising, extreme fatigue, extreme chills and sweats, mouth sores constantly, 24/7 nausea and loss of appetite, some tremors, depression, boils appeared including around my eyes. I developed a serious eye infection after the 8th injection. The ophthalmologist said he’s only seen this type of eye infection in chemo patients. My olfactory senses became affected. Food started tasting different and fragrances seemed off. Entyvio did work, but it’s clearly a toxic drug to where the quality of life is impacted severely in my case."
Entyvio (vedolizumab) "Entyvio has saved my life. Prior to being diagnosed with UC, they were treating me for diverticulitis with antibiotics which made everything worse. I was out of work the entire month of October '18. My hair was falling out in blobs prior to Entyvio due to the malnutrition I was suffering because my intestines could not absorb nutrients from what little food I could eat and keep in my body, and I lost 37 pounds in a month. After starting Entyvio, I could eat food again and started taking Biotin and a multivitamin. My hair stopped falling out and I have been on the road to recovery for the last 10 months."
Entyvio (vedolizumab) "30 years with ulcerative colitis. Tried it all, even Humira. Was on the verge of having my colon removed, and the doctor suggested that I try Entyvio. Had immediate results, and after 6 months, still symptom-free. It's been a miracle drug for me and changed my life around."
Entyvio (vedolizumab) "I have suffered from UC for 14 years. I have tried everything, and it would work for a short while, and then I flared up again. Remicade gave me bad side effects. I stopped and tried good diets and natural means for a year. I had an infection that caused my UC to come back, and I was very sick for a few months. My doctor put me on Entyvio, and it took three or four months for the medicine to work. I have been taking it every four weeks for a year, and now I feel excellent. I have not felt this good in years. For side effects, I had one terrible headache, and sometimes it feels like I have a cold. I always lost a lot of hair with prednisone, and after flares, I have my hair back now, gained weight, and feel very strong."
Entyvio (vedolizumab) "I tried Entyvio after failing on Remicade for moderate to severe ulcerative colitis. The first time, it seemed to help, but I had an insurance issue and had to go on Humira. I lost all of my hair after taking Entyvio, but it was several months later. Humira didn't work at all, so they put me back on Entyvio. Almost 15 months later, it didn't work at all and made the diarrhea even worse. Besides that, I didn't notice any side effects. Well, several months later, all of my hair fell out again, and after a year, it still hasn't grown back. It might be worth trying if it is a last resort, but I wish I had never tried it because I had no curative results or relief, and I am so depressed that I am a bald woman. They need to let people know that permanent hair loss is a possible side effect of Entyvio. They push these drugs to market so fast that people are basically guinea pigs, and long-term side effects are not revealed until years later."
Entyvio (vedolizumab) "My doctor talked me into taking this against my objections after my second flare two years after diagnosis. Was on it for a year, the worst decision of my life. Wrecked my immune system, and lost half my hair when it was thick to start with. Crashed me hard after a year and took several years to recover energy, drive, motivation, stop getting sick all the time, etc. Would never ever recommend this drug. Been medication free for several years and was 100% fine after diet changes when my gastro swore up and down I’d be on a biologic for life. Would only recommend after extreme diet and lifestyle interventions, failed gentler medications, and only as an absolute last resort for the worst cases of UC where death is a possibility."
Entyvio (vedolizumab) "I was diagnosed with UC in 2017. I tried several medications with only partial reduction in symptoms. I have been on Entyvio for about 1.5 years now, and my results are much improved with no side effects. I don’t get tired after injections and think I get a cold about as frequently as before starting Entyvio. I still get the occasional minor flare where I have some urgency or have to make a few extra trips to the bathroom a day, but all in all, I am in a much better place. I hope I can continue to use Entyvio for a long time."
Entyvio (vedolizumab) "I've been on Entyvio for 2 years for ulcerative colitis. Before that, I almost died from being septic. I tried Humira after that, and I almost died of heart failure. Finally, they put me on Entyvio. A miracle drug for me! I'm in 98% remission, having infusions every 4 weeks. My side effects are itching all over. I started taking Vitamin E, and it solved the itching. I have 2 choices: always running to the bathroom and not having a normal life, or keep taking this life-changing drug. I choose a better life with Entyvio."
Entyvio (vedolizumab) "I have had UC since 2009. I have tried mesalamine, Imuran, Remicade (for 4 months in 2013, after which I developed antibodies, so I had to stop) and Entyvio (Aug 2019 - Nov 2019). I tried Entyvio in August 2019 after a stint in the hospital in June 2019. By the 3rd infusion, joint pains were unbearable, so after 4 infusions, I stopped. In that time, Entyvio did help my symptoms by maybe 30%. I shed hair on Entyvio, but it has recovered now. 6 months since my last infusion of Entyvio, I still suffer horrible pains in my wrists, ankles, fingers, and elbows at all times of day and night. Usually, one side only, sometimes both sides equally. The bones in my elbows hurt as though they have been badly bruised or someone took a hammer to them. I am waiting for test results to see if I have developed antibodies the same as I did with infliximab."
Entyvio (vedolizumab) "I was referred to try Entyvio shortly into 2018 after being switched off Humira (taking 2 shots weekly). I had tried a majority of products on the market as of that time, and it usually worked for a short period. You do feel some symptoms immediately after the infusion, primarily total fatigue, and you usually sleep the rest of the day... or at least I do. Overall, the drug has done wonders for me as of late. You still really need to watch what you eat and restrain yourself from alcohol, but it’s worth it. I put back on the weight I lost from the flare-up and feel great."
Entyvio (vedolizumab) "I was diagnosed with ulcerative colitis at the age of 6. I'm 23 now. I was started on Entyvio back in October, it took a while for the effects to really start helping me get over this flare-up. But it's well worth it. I feel alive again, and not just like a ghost who haunts the bathroom. The side effects are a little annoying, like living in a constant state of stuffy/runny nose, sneezing, headaches, and fatigue. The day of the infusion, I will fall asleep immediately and sleep most of the day, and for the rest of the week, I deal with it. At my most recent appointment, my doctor said I had color to my face and I seemed a lot more alive."
Entyvio (vedolizumab) "DO NOT TAKE ENTYVIO!!! That is, of course, unless you want your immune system to shut down and be unable to fight off even the littlest common cold. Not to mention the crazy amount of debilitating side effects: headaches, sore muscles, major fatigue, restless leg syndrome, feeling like you want to throw up out of the blue, back pain, and coughing. Oh, and if you do happen to get a cold while you're already experiencing these side effects, you might as well multiply the pain by 3 and prepare for a very long recovery as your body is too weak to fight off any disease. As for my colitis symptoms... Entyvio almost TRIPLED my symptoms!! Constant diarrhea, non-stop abdominal discomfort, and literally you are up all night. AVOID BY ALL MEANS!"
Entyvio (vedolizumab) "I have been taking Entyvio for a year now, and I am doing great. I had UC (ulcerative colitis) for 22 years now. I have tried every medicine out there, nothing worked for long, but with this medicine, I’m fine. The only side effect I experience is fatigue and a rash once in a while, but I love this medicine. I feel human again."
Entyvio (vedolizumab) "Entyvio saved my life, both socially and physically. I went through Lialda, Uceris, Prednisone, Canasa, and so on! These drugs could only help the upper portion of my colon, but not my proctitis, pain, urgency, and tenesmus. Entyvio worked for me! Symptom-free after ONE dose :) Going in for my 4th dose."
Entyvio (vedolizumab) "UC since 2000. Active working woman. Was on Mezavant with no flares for years. 2018: traveled around the world, got a UC flare back home. Checked for travel disease: NO. Started Entyvio. Intestinal problems gone, and colposcopy was A1. Entyvio side effects kicked in: migraine, burning numbness on feet, hands, lower legs, finger joints popping, difficulty walking on feet, extreme fatigue. All my data works are OK. IRM OK. Vitamin D too low but OK now. I stop Entyvio NOW after 10 months. Back on Mezavant with a higher dose. Will see a neurologist, but I am sure (and my general doctor also, but not my gastro...) symptoms are linked to Entyvio. My general doctor made me keep a journal of daily symptoms for 3 months, food, events, medication. Shows clearly curves of migraine, fatigue, and numbness getting really high for 14-20 days AFTER injection and staying low for the rest of 8 weeks. And back up again. Can’t continue with side effects."
Entyvio (vedolizumab) "After 6 days of my first Entyvio infusion I was symptom free. My hair had definitely thinned, I don’t care, I feel alive again. I have been on for 8 months. Life saving for me. I’m 63 recently diagnosed. Tired after infusion, take 2 Benadryl and go to bed!"
Entyvio (vedolizumab) "I used Entyvio for around 9 months for ulcerative colitis. Not only did I lose all of my hair, 2 years later it has not grown back. I am bald on the top right and entire back of my head. I also lost my eyebrow hair and leg hair. I had no results with this drug, and now I am devastated and depressed from being permanently bald."
Entyvio (vedolizumab) "I am due for my 4th injection of Entyvio in a few days. Towards the end of the 2nd infusion, I started to feel worn out. Thought it must mean my body is in need of the 3rd. Since the 3rd infusion, I have been suffering with chronic fatigue. It is debilitating, which in turn messes with your mental health. Entyvio has almost eliminated my UC symptoms but at the price of my quality of life. Also experiencing hair loss & breakouts. My G.I. doctor says fatigue isn't a thing or a side effect, my case worker at YOURVANTAGE says it's a common side effect but to get 4 injections before stopping, my GP says maybe take a drug holiday... I'm at a loss as to what to do, but leaning towards stopping."
Entyvio (vedolizumab) "I was on Entyvio for 6 months. I had no symptoms during my loading doses, and then it hit me like a rock! I have episodes of stroke-like symptoms. My hands would get sweaty, I get to where I feel like I'm going to pass out, lightheaded, overall weird feeling. I couldn't even drive to work because of the attacks. Muscle aches, flu-like symptoms, and chronic sinusitis. Missed several weeks of work from episodes. I also developed a rectal abscess. I had an MRI to see what's going on, and there's signs of minimal damage to my brain! I had none of this before Entyvio."
Entyvio (vedolizumab) "I’ve tried just about everything for ulcerative colitis (UC) over the last 15 years. Most meds work for a while and then stop. After 12 months of Humira, which helped somewhat but was inconsistent, I started on Entyvio in April 2018. After the first 2 infusions, I felt much better. I was closer to remission than I have been in years after the week 6 infusion and continued feeling great for about a year. I’ve started having flares again, and my doctor is considering going to more frequent infusions to get me back on track. The only side effect was some joint pain in my hands and wrists. It was severe at times but completely went away once I was on the maintenance doses."
Entyvio (vedolizumab) "I was diagnosed with Ulcerative colitis (UC) 22 years ago. I was on medicines including ASACOL until I reached a remission that lasted for seven years and I thought I got back to normal and a flare up would never happen again until the last 7 months when I had the surprising flare and after the colonoscopy the doctor prescribed Prednisone and I took it for 3 months where I got better but with many side effects and they then said must continue with Humira as cortisone medicines must not be taken for so long. I started humira and had 7 injections with no improvement until they decided I should change to Entyvio on 24/01/2020 was my first infusion and until now my flare up is getting worse with no improvement and i feel so sick with severe abdominal pain and many bathroom visits a day.."
Entyvio (vedolizumab) "I just wanted to write to thank everyone for their feedback and advice. My gut feeling was to not go in this even though drs told me Entyvio is the best, safest thing (apparently not). I have a friend who's decided to go on it about 3 infusions now and not well. Severe joint pain and sore bones throughout, as well as dealing with a rash and possible other autoimmune conditions that have not been verified yet if it's drug-related. All symptoms are since being on Entyvio. I'm so glad that I followed my instincts and not the drug's/Dr. Hoping for some better options that are safer for all of us!"
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