User Reviews for Vedolizumab to treat Ulcerative Colitis
Also known as: Entyvio
Vedolizumab has an average rating of 5.8 out of 10 from a total of 63 ratings for the treatment of Ulcerative Colitis. 41% of reviewers reported a positive effect, while 33% reported a negative effect.
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 cant 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 8yr 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 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): “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 multi-vitamin. My hair stopped falling out and I have been on the road to recovery for the last 10 months.”
Entyvio (vedolizumab): “I have suffers 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. Stopped and tried good diets and natural means for a year. I had an infection and caused my UC to come back and I was very sick for 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 once a terrible headache and sometimes it feels like 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 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 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): “30 years with ulcerative colitis. Tried it all even humira. Was on the verge of having my colon removed and dr suggested that I try entyvio. Had immediate results and after 6 months still symptom free. Been a miracle drug for me and changed my life around”
Frequently asked questions
- Is Entyvio an immunosuppressant or a biologic?
- How much does Entyvio cost per month?
- Can I take antibiotics while on Entyvio?
- Does Medicaid cover Entyvio?
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): “I tried Entyvio after failing on Remicade for moderate to severe ulcerative colitis. The first time it seemed to help but 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 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 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): “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 the 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): “I have had UC since 2009. I have tried messalizine, imuran, remicade (for 4 months in 2013 after which I developed antibodies so had to stop) and entyvio (aug 2019 -nov 2019). I tried entyvio in August 2019 after a stint in hospital in June 2019. By 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 wrists, ankles, fingers, 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 lately. 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 flare up and feel great.”
Entyvio (vedolizumab): “I been taking entyvio for year now and I am doing great I had uc (ulcerative colitis to 22 yrs now. I have been every medicine out nothing work 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): “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'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 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’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 Dr 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 have had UC since 2010. I took Lialda for years then weaned off of it when I moved to Europe for a while. In December 2018, I had my 8 year since diagnosis colonoscopy and my GI couldn't believe I wasn't in the hospital with how inflamed my colon was. I was in pain but I learned to deal with it. Now, 7 months after starting Entyvio, I am wondering if the side effects are worth it. My colon is definitely better but I am constantly tired, my bones hurt, and I always seem to get sick a week or so before every infusion and wonder if I'll even be able to get it. The pain in my joints can be unbearable. I am going to see a rheumatologist to see if they can help me get this under control since my UC is finally in remission.”
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 ENTIVYO.”
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 & break outs. My G.I. Dr says fatigue isn't a thing or a side effect, my case worker at YOURVANTAGE says its a common side effect but to get 4 injections before stopping, my GP says maybe take a drug holiday.....I'm at a lost as to what to do but leaning towards stopping.”
Entyvio (vedolizumab): “UC since 2000. Active working woman. Was on Mezzavant with no flares for years. 2018: travel around world, got 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 to walk on feet, extreme fatigue. All my data works are OK. IRM OK. Vit. D too low but OK now. I stop Entyvio NOW after 10 mths. Back on Mezavant with higher dose. will see neurologist but I am sure (and my gen doctor also but not my gastro...) symptoms are linked to Entyvio. My gen doctor made me keep a journal daily symptoms 3mths, 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): “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): “Was on verge of having colon removed having tried humira and other treatments with no relief. After 3 months on Entyvio started to get results. Symptoms are reduced but not eliminated. Quality of life is much improved. Have been on it over two years.”
Entyvio (vedolizumab): “This is the first UC drug that I've seen an immediate and significant improvement from. It has given me my life back. After a nasty flare over a long period of time, Entyvio had me feeling better within the first few weeks. I have been in remission for over a year taking this every 8 weeks, this is the longest remission streak I've ever had since being diagnosed 15 years ago. For a day or two after the infusion I am VERY tired, have some joint pain and headaches, but they are relatively mild compared to a UC flare. I also find if I am sufficiently hydrated before and after the infusion the side effects are far less severe.”
Entyvio (vedolizumab): “Entyvio saved my life, both social and physical. 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 my 4th dose.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
Learn more about Ulcerative Colitis
IBM Watson Micromedex
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Mayo Clinic Reference
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