Vedolizumab for Ulcerative Colitis User Reviews (Page 3)

• Peg...
• Taken for 6 months to 1 year
• June 22, 2023

Vedolizumab "My doctor insisted on me taking Entyvio infusions for my colitis. I've been taking infusions for a year now, and now I regret ever taking this drug. It started off with my nose being stuffed up and runny like I had a cold. Then pain started in all my muscles and joints, now I can hardly move. I'm almost disabled with pain. I used to walk every day. Now I can't because of too much pain. Never again, it's not worth it."

• KMA...
• December 29, 2017

Vedolizumab "I was on the clinical trial scheduled for 30 injections, after the second, I no longer had symptoms. I was given a third injection per the trial policy. I was then told I would no longer get the injections since it worked for me. I've been in remission since my last injection. I am still taking mesalamine. It has been several months and no symptoms. Thank God."

• UC ...
• Taken for 2 to 5 years
• January 14, 2025

Vedolizumab "I started on Entyvio in 2020 when my GI doc was afraid I was going to have to have my colon removed. Nothing had worked up till then except prednisone. The Entyvio didn't improve my symptoms until after the 4th dose. Although my colonoscopies do show microscopic evidence of UC, I have not had symptoms in four years. I have an infusion every 8 weeks. I have not noticed any worrisome side effects. I am so grateful for this medication. Life was hell before I was prescribed Entyvio."

• goi...
• Taken for 2 to 5 years
• September 6, 2022

Vedolizumab "I have been on Entyvio for 4 years. Pancolitis. It helped right away. I have only had a day in the whole 4 years where I passed blood. This 4th year, I definitely have worse sinus problems, joint pain, fuzzy head feeling, but manageable. I am kind of more tired this last year on it, but I'm 42 going on 43, so maybe age-related. On 8 weeks still. It is a good drug. Colon cancer runs in my family, so I have to be vigilant. Overall, it works for me."

• Bob...
• Taken for less than 1 month
• November 2, 2020

Vedolizumab "I've had ulcerative colitis for 16 years. I just got my first dose of Entyvio, and 3 days later, I had 2 seizures, and the doctor denied that Entyvio was the reason. Now my brain is foggy, and I don't feel normal. I will now have to go back to mesalamine. Beware and ask your doctor a lot of questions, as this drug is really unproven. I know a person that had seizures after the first dose of Humira, and the doctor also denied it had anything to do with Humira. These are similar compounds. Don't be an experiment."

• Jas...
• Taken for 2 to 5 years
• September 19, 2023

Vedolizumab "I've had UC for 25+ years, most of my adult life, hospitalized once. I've taken ASACOL for many years and tried several other oral medications that I thought were working okay, as I'd only have a few flare-ups per year. Most wouldn't be acute long enough for me to request steroids to combat the flare-up. After consultation with a new GI doctor, I followed his recommendation to try a biologic, and Entyvio was the choice. It has been about 3 years now that I haven't had a single flare-up, and I've never felt better! Entyvio has changed my life with zero side effects. I am very satisfied with the medication. Thank you!"

• Mar...
• Taken for 1 to 2 years
• May 21, 2023

Vedolizumab "Took Entyvio for 16 months after having a bad flare-up following the COVID vaccine. It took 4 months to induce remission, but it finally did. I've made the choice to stop the treatments now as I have been non-stop sick for the past 6 months with viral infections and bacterial infections. Developed shingles, numerous colds, flu, gastro bugs, and every little thing that my toddler brings home from creche, only I stay sick for weeks while he bounces back. The slightest cut or graze becomes infected. Really feel like my immune system has been hammered. For anyone who suffers from the awful joint pain, I found shiatsu works amazingly. I would recommend taking the drug for a limited time to induce remission. Try out holistic therapies, psychotherapy, and change your diet, and then get off this drug. It works, but I'd be worried about long-term effects."

• hot...
• Taken for 2 to 5 years
• March 7, 2024

Vedolizumab "I started Entyvio approximately 3 years ago. The first year was okay, not so much pain. From the start, I experienced not going to the bathroom enough but felt it was better than 16 times a day. A year or two after starting Entyvio, the headaches started and are worse and worse as time goes on. I am currently experiencing sore throats, knee and joint pain, constant and severe back, side, and stomach pain."

• jan...
• Taken for 6 months to 1 year
• March 5, 2023

Vedolizumab "I was having bloody diarrhea daily, and anything I ate sent me running for the bathroom. Entyvio has completely stopped my diarrhea. I do have some back pain, but I am also 50 years old. I eat healthily (no gluten, limit dairy, and limit red meat), and I take daily walks even if my back hurts. I feel like no matter what, there will be side effects, you just have to pick what you can live with. I will stay with Entyvio."

• Don...
• Taken for 2 to 5 years
• November 9, 2023

Vedolizumab "Entyvio has made my life considerably better. Other medications only minimally helped with my condition. My symptoms were so bad, I was not able to work any longer. I also wasn't able to spend time with family & friends. Now I'm able to again. I do experience side effects each time I have my infusion (headaches, fever, nausea & cramping) for the first few days after my infusion; but the 4-5 weeks after are great!"

• Car...
• Taken for 1 to 6 months
• June 18, 2022

Vedolizumab "DO NOT TAKE ENTYVIO!!! I would rather be bleeding from my butt right now than suffer as I have been for the last 3 weeks. I had my first infusion 4 weeks ago, and I'm regretting it big time. I have such bad immunity. I can't even fight off a common cold. This dirty thing has caused me shingles, and today I've now got chickenpox, apparently a common side effect when you look it up. My hair has gone brittle and falling out, I'm now wearing a wig I got off Amazon. My C-section scar has become inflamed and sore. I feel so tired, and all I want to do is sleep. I was better off having my flare-ups. Also, they don't tell you this, but it's online, Entyvio can wake up the HPV virus in your body if you have it, and you can get cervical cancer from it, along with about 6 other cancers. Stop taking it if you are on it. This is gonna kill us off. The dirty thing!"

• Anonymous
• Taken for 5 to 10 years
• August 17, 2023

Vedolizumab "Prior to receiving Entyvio, several other medications, including at least 3 other biologics, stopped working within a few months. Entyvio got my ulcerative colitis under control so that I almost felt normal again. However, I received Entyvio infusion every 6 weeks rather than the standard 8 weeks. Testing showed my body was depleted of Entyvio after 6 weeks. The 6-week regimen brought the condition totally under control. My doctor's office was calling me their poster child for excellent Entyvio control. The above was deliberately written in the past tense because due to some unfortunate circumstances I did not receive Entyvio for over 7 months. I am now back at the loading position to get back on Entyvio. I had my zero-week infusion two days ago, appointments for week 2 and week 6 infusions, then return to the every 6-week regimen."

• Anonymous
• Taken for 1 to 6 months
• October 13, 2021

Vedolizumab "I had really thick hair. I started Entyvio, and it made my hair shed so much that I lost probably 30% of my hair. I wasn't too concerned about it at first because I used to have to get my hair thinned because I had so much hair. I stopped Entyvio 3 months ago, and my hair is still thinner than it used to be, and I am still shedding probably more than the average person, but not nearly as bad as when I was on it. I could put my hands through my hair and see so much falling out. Entyvio stays in your system for at least a month after your last dose, so I'm hoping my hair will become healthier again. I'm on Humira now, so hopefully it doesn't cause it too, but it's gotten MUCH BETTER being on Humira. Also, Entyvio didn't work for me for UC, it only has a 40% success rate. I was on it for 6 months."

• car...
• Taken for less than 1 month
• November 7, 2023

Vedolizumab "So far, so good. I've only had three treatments. This is the third drug in this category I have been given. Side effects so far are tiredness and a mild headache for about a week post-infusion. The drug is effective in controlling symptoms of ulcerative colitis."

• Mim...
• Taken for 1 to 2 years
• October 30, 2023

Vedolizumab "I was on Entyvio for almost 2 years. The truth is, it was the only treatment that worked for me and put a stop to my symptoms. However, the joint pain was unbearable. Over the months, I began to have severe allergic reactions. I felt so tired after every IV of Entyvio that I couldn't stand up from my bed. I also started to feel facial paralysis and other severe pain, and I had to give it up. It's effective, but you have to decide how long to endure because the side effects are very strong."

• dan...
• Taken for 1 to 6 months
• June 3, 2023

Vedolizumab "Started on Entyvio in March 2023. Have had no real side effects, just a little tired the day after the infusion and a slight headache the day of. I am in the third quarter of the first 8-week break. Have had some issues during this period with soreness inside my lower abdomen, not sure if it is related. I usually have well-formed stools and less frequent bowel movements, although I have had some diarrhea when I experienced soreness in my abdomen."

• Pip...
• Taken for 5 to 10 years
• July 24, 2023

"It has been brilliant for several years except when I flared up during lockdown and went down to every 4 weeks. This got me back into remission but I have developed small fiber neuropathy (pins and needles on the soles of my feet) and tinnitus that has become hearing loss in both ears (hearing aids now). Don't know whether these symptoms are connected to infusions and whether to stop..."

• Rel...
• Taken for 6 months to 1 year
• March 10, 2019

"I was severely ill from my diagnosis of ulcerative colitis, had been hospitalized 3 times in 4 months, and the doctors were at a loss as to what to do. Infliximab failed, and I was on the operating list as a last resort. Then, after a bowel infection, they tried vedolizumab, and a year on, I am doing well and almost have my life back!! Can’t believe the difference it’s made. Shame I didn’t have this first, as I could’ve avoided prolonged agony and wouldn’t have lost a year of my life trying to get to this point."

• Lot...
• Taken for 2 to 5 years
• October 3, 2019

"10 years of pancolitis. Slipping and sliding with different drugs for years 2 to 8 - one step away from colostomy. Consultant suggested vedolizumab, it's been amazing, almost full remission for the last 2 years, no side effects - long may it last!"

• Pet...
• October 28, 2019

"I had the worst experience with this medication. My ulcerative colitis (UC) symptoms improved, however, after 48 hours of having the first dose, I started to develop flu symptoms. By day 3 after developing symptoms, my flu was severe. I had all side effects you could think of, these being: headache, high temperature/fever, loss of appetite, feeling sick, dry heaving (which severely strained my muscles and organs and made it worse trying to eat), sore throat, oral thrush, drowsiness, feeling very weak, weight loss (due to little food intake), sore sinuses, backache, chills with high temperature, fast heart rate, bad night sweats, sleeplessness, bad cough, ankle aches when lying in bed, and sore eyes. It has now been over 3 weeks since I had the first dose, and I haven't had another dose since then, yet I am still suffering with a cough and backache. My temperature still varies and gets high later in the day. From my experience with IBD infusions, all I can say is stay away from them! They do more damage than good!"

• Pat...
• Taken for 2 to 5 years
• May 17, 2022

Vedolizumab "Entyvio has worked very well for me with no noticeable side effects. I was in bad shape when I started on this med. I have taken infusions every 8 weeks for about 2.5 years, and I am very grateful for this medication."

• Deb...
• Taken for 1 to 6 months
• September 25, 2021

Vedolizumab "Had serum sickness on Remicade due to an extended gap in treatment, after failed treatment to conventional therapy. Rash and fever to Humira. I did very well on SYMPHONI. But... insurance refused to pay for the monthly injections (Medicare/supplement) 3 doses in. So I had fatigue, hot flashes, minimal joint pain. Good results so far. I don't like going to the office for infusions when self-injection was going well. The company that produces this drug refused financial assistance. I retired from nursing after 46 years in a hospital setting."

• Anonymous
• Taken for 1 to 6 months
• October 18, 2021

Vedolizumab "I have received my first three infusions, and my hair is falling out so badly. I have lost at least half my hair. I used to have thick, beautiful curls. I was so sick before the Entyvio. It’s working, but after the third infusion, I experienced joint pain that made it difficult to walk, fatigue, and aches that felt like the flu was setting in. Symptoms continued for two solid weeks. I just wish my hair would stop falling out. I wake up in the middle of the night thinking about it. I’m 47 and devastated that I am on my way to being bald."

• Tom...
• Taken for 5 to 10 years
• October 21, 2020

"I have had UC for about eight years and have been on Entyvio the past five years. I was originally on Apriso, which worked well for about a year. Budesonide was added, and it made a big difference, but since it's a steroid, I was unable to take it indefinitely. So I started on Entyvio in the fall of 2015 and have been happy with the results. Early on, I dealt with joint pain and fatigue after my infusions. The joint pain stopped, and I feel fatigued for maybe a day afterward. The one difficulty I have is the severity of colds I get. They seem to last 3-4 weeks, I feel terrible, and the stuff I cough up and blow out of my nose is beyond belief. I have allergies, so a cold would typically cause problems for me, but not like what I experience now."

• Jay...
• Taken for 1 to 6 months
• September 16, 2020

"Started this drug, vedolizumab, in June 2020 after being hospitalized due to a bad flare-up of Ulcerative Colitis. Was put on 40 mg pred and had first vedolizumab infusion. Came off steroids in August '20 and have been steroid-free. My symptoms have improved a lot, I just get abdominal pains, which I can manage. However, the side effects of vedolizumab have been pretty bad. At first, I had really bad joint pains, especially in my ankles, wrists, and back. Then the fatigue was really bad, I still feel very tired. I have good days and bad ones. I also get random attacks of cold and runny nose. I also get strange chest tightness, had a CT and X-ray, all fine, so I can only assume it's a side effect of vedolizumab. Although vedolizumab has helped my UC a lot, the side effects have been pretty awful. I'm just doing my best to stick it out in the hope that the side effects will wear off with time. My advice: give it a try if nothing else has worked."