Generic Name: Entyvio (vedolizumab)
Entyvio Reviews
For Ulcerative Colitis "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?"
For Ulcerative Colitis "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."
For Ulcerative Colitis "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??"
For Ulcerative Colitis "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."
For Ulcerative Colitis "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."
For Ulcerative Colitis "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."
For Ulcerative Colitis "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."
For Crohn's Disease "I've been dealing with Crohn's for over 20 years. Through most of that time, I've been on oral meds such as Sulfasalazine, Imuran, and Asacol. These meds sort of controlled the symptoms, but I still had flare-ups. Almost 2 years ago, I moved on to Entyvio. Life has been so much better, as I don't have to plan my day around where all the restrooms are along my sales route. My colon actually had beautiful, healthy pink tissue during my last colonoscopy. I would recommend Entyvio to anyone with Crohn's to try before Remicade or Humira, as Entyvio's side effects are fewer."
For Ulcerative Colitis "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."
For Ulcerative Colitis "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."
For Crohn's Disease "I was hesitant to try this drug because of the reviews on this site. I'm not sure why I put more faith into the reviews here than my doctor's and son's advice. I finally tried the drug, and it saved my life."
For Ulcerative Colitis "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."
For Crohn's Disease "My Crohn's was diagnosed in 1978. Started Entyvio in June 2019. Have had the 3 loading doses and am now on the 8-week infusion schedule. Although my Crohn's symptoms have abated, I am experiencing unpleasant side effects: constant joint pain, especially in the neck and shoulders; severe headaches; blurred vision; cuts not healing; hot flashes; chills. Not happy about the side effects, but they are better than the severe abdominal pain and diarrhea."
For Crohn's Disease "My husband started entyvio a year ago at the recommendation of a new GI doctor. 4 months ago he got Giardia, two weeks ago he got Shegella. He is now in the worst crohns flare of his life. The GI doctor at the local hospital said based on the amount of inflammation this drug has never worked. Don’t try this drug! Doctors are only interested in the amount of kickback they are getting from the drug company."
For Ulcerative Colitis "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."
For Crohn's Disease "I started Entyvio about 8 weeks ago for fairly severe Crohn's disease. I have to say I have felt significantly better than I have in years, and each week has yielded better symptom relief. Significantly less urgency and trips to the bathroom overall. I don't love the IV infusion route, but the results have been worth it to me. I am hoping the at-home self-administered injections get released later this year to eliminate the infusion inconveniences. Far better than Humira or Stelara worked for me and with less side effects."
For Ulcerative Colitis "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."
For Ulcerative Colitis "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."
For Crohn's Disease "Started Entyvio for Crohn's disease (CD) - first drug I had tried. It worked very slowly, but I did experience slight improvement. Made it to my 3rd dose. Within 9 mins of my drip for my 3rd dose, my throat closing, face got very hot, turned bright red, heart beat went faint, and had the sensation of passing out (maybe I did, don’t remember it all). Definitely felt like I was dying. 911 had to be called. 2-3 hrs after the second dose, I had the same reaction at home with heavy palpitations, but it would come and go. First dose, I had a really weird sore throat."
For Ulcerative Colitis "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."
For Ulcerative Colitis "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!"
For Crohn's Disease "Never again. Severe allergic reaction to 2nd Entyvio IV. I've had Crohn's for 30 years and taken many different meds. I was recently diagnosed with liver cirrhosis F4 and had to stop methotrexate. I also take Apriso. My GI doctor said I should start Entyvio. First infusion went fine. 2 weeks later, I had my 2nd infusion. Within 2-3 minutes, my chest tightened, throat started closing up, my face got extremely hot and throbbing and was swelling quickly. The whites of my eyes turned completely blood red. The IV was immediately stopped and flushed with saline. Tried again with the med going in slower. Immediately, I started having the same symptoms. 3 weeks later, I was given my first IV infusion of Stelara. Within 1 minute of the IV being started, I had the same reactions but worse. I thought I was going to die. I refuse to take any more IVs."
For Crohn's Disease "I have had IBD (Crohn's) for 15 years. Flares only controlled by prednisone. Failed Imuran and 6mp with pancreatitis. Had limited success with Uceris but no great inflammation control. Mesalamine never helped much. Got a new G.I., and he suggested Entyvio after a colonoscopy showed inflammation. Former G.I. was hesitant to use biologics, but I really was ready to try something new. I have had three induction I.V.s. The I.V. is very easy. I live close to the doctor's office, and I am in and out in less than 35 minutes. The only possible side effects are a scratchy throat and some mild itchy skin. Both of these things could be unrelated. The nurse warned me Entyvio is slow to take effect, but I *believe* it is working for me. My inflammation is greatly decreased, and my guts have healed. So... if you are struggling with IBD and the doctor suggests this drug, I would recommend trying it."
For Crohn's Disease "I had the first dose of Entyvio 2/19/18. I've had 3 doses so far. I will not be having any more. I felt better before I started Entyvio. I have gained roughly 15 pounds (do not need the extra weight). Terrible body aches, especially lower back, little pimple-like growths over my body, tired all the time. Nope...this is not for me."
For Ulcerative Colitis "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."
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