Vedolizumab User Reviews & Ratings (Page 5)

• carol
• Taken for less than 1 month
• November 7, 2023

Entyvio (vedolizumab) for Ulcerative Colitis "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."

• MimiSan
• Taken for 1 to 2 years
• October 30, 2023

Entyvio (vedolizumab) for Ulcerative Colitis "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."

• Lissa
• December 13, 2016

For Crohn's Disease "Was in remission when I began entyvio, within 90 days I began to become jaundice, it caused severe problems with my eyesight even having bile drain from tear ducts, massive bile fluid retention, changes in liver function, unexplained abscesses, acute disease progression requiring hospitalizations, corrective surgeries. Since I have discovered new safety guidelines have been released which Takeda pharmaceutical hid, and failed to inform patients or doctors that fistulizing patients are NOT suitable candidates for this drug, and as of Dec 2016, the maker and the FDA have not made this information public as company stock would plummet. This drug is extremely dangerous and was fast tracked by the FDA due to the companies financial crisis.."

• Mags
• May 28, 2020

For Crohn's Disease "Started Vedolizamab for Crohn's diease April 2020 in the midst of COVID-19 pandemic, not recommended. Had a reaction as first dose just completed, hot, flushed, hands swelling palms itchy. Was given IV Piriton then ok but sleepy that day. Next day nausea stopped (had it 2.5 years), felt better every day, energized for 10 days then bam, all came back. 2nd dose same reaction 10 mins in, IV Piriton, great for 10 days, then pain, gurgling, D&V, blacked out. Shoulder neck pain bad. 3rd dose not as bad reaction, no Piriton, but also didn't felt as good as doses 1 & 2, feet and legs so swollen, weight increase 9lbs retained fluid, bad gastritis, leg pains, eyes bad. OFG (orofacial granulomatosis) same my mouth ulcers got worse, oral swelling worse. So hope I settle down during 8 weeks before next one. The nausea though not as bad at moment, so that is good. My NHS unit swapped location to enable us to continue with meds during pandemic otherwise I would have been worse I think having to wait months for treatment."

• Jason
• Taken for 2 to 5 years
• September 19, 2023

Entyvio (vedolizumab) for Ulcerative Colitis "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!"

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

Entyvio (vedolizumab) for Ulcerative Colitis "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
• May 2, 2022

For Crohn's Disease, Maintenance "Started Vedolizumab in December 2021 had two infusions and then started using the entyvio pen every two weeks started to get huge injection site reactions where my leg swelled up and was super itchy, hard as a rock and hot so was switched back to the infusions. Since this last infusion about 10 days ago I feel so tired and sleepy, have nausea every day and feel dizzy and eyes are sensitive to the daylight, don't have headaches or that but feel like a weird sensation throughout my body plus have a lot of joint pain, I feel like I'm going crazy and people think I'm a hypochondriac :( gonna see if I can change to something else because this feeling is awful was getting flares every couple of months but I dunno which is worse anyone else feeling this ?"

• Pippin
• Taken for 5 to 10 years
• July 24, 2023

For Ulcerative Colitis "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..."

• dangit
• Taken for 1 to 6 months
• June 3, 2023

Entyvio (vedolizumab) for Ulcerative Colitis "Started on Entyvio in March 2023. Have had no real side effects, just a little tired the day after 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."

• Never...
• Taken for 1 to 6 months
• September 30, 2021

For Crohn's Disease "I had my 2nd loading dose. It floored me, constant nausea, a weird popping sensation in my brain. Severe muscle aches and spasms. A year later I am still the same no better. That stuff has ruined my life. I'm now waiting in a pandemic (have no clue when I will get seen) to see a neurologist. I saw a rheumatologist and have been diagnosed with fibromyalgia which consultant has said due to vedolizumab. Many people have success. This has ruined my life."

• Farme...
• Taken for 6 months to 1 year
• August 17, 2021

Entyvio (vedolizumab) for Crohn's Disease "Been on this for just under a year now and seems to be doing the trick. Cimzia was no longer working and that was after remicade and humira. Running out of options it seems but luckily this drug seems to be working well."

• Jonat...
• Taken for 1 to 2 years
• May 19, 2023

Entyvio (vedolizumab) for Crohn's Disease, Maintenance "Post ileocolectomy surgery, Entyvio was prescribed for maintenance. The initial 8-week dosage was increased to every 4 weeks after blood work revealed insufficient concentration. A colonoscopy after 6 months revealed no polyps, no inflammation, and no ulcerations. I suffered no side effects. Note: Entyvio was prescribed after 5 years on Humira when blood work revealed the TNF blocker was no longer effective. Since Entyvio is administered by infusion at the hospital, it is covered by Medicare Part B, not Part D, and the copay is covered by a Medigap policy (AARP UNITED HEALTH CARE)."

• Lottie
• Taken for 2 to 5 years
• October 3, 2019

For Ulcerative Colitis "10 years 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 last 2 years, no side effects - long may it last!"

• Peter
• October 28, 2019

For Ulcerative Colitis "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, back ache, 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 back ache. 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!"

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

Entyvio (vedolizumab) for Ulcerative Colitis "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."

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

Entyvio (vedolizumab) for Ulcerative Colitis "I have received my first three infusions and my hair is falling out so badly. I have lost at least half my hair. I use to have think 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, 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."

• formi...
• July 25, 2021

Entyvio (vedolizumab) for Crohn's Disease "Diagnosed with Crohn's and started Entyvio a year and a half ago. My inflammation markers have been trending down this whole time and I am now in remission. This drug works very well for controlling my Crohn's. I did not have any remarkable or lasting side effects from Entyvio until recently. After my 16th infusion I started getting a rash around my eyes, itchy eye lids, and flaking skin. The dry skin patches have now spread to around my ears and mouth. If this side effect can be managed, I will have no issue with this drug."

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

For Ulcerative Colitis "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."

• steveo...
• Taken for 2 to 5 years
• September 10, 2022

For Crohn's Disease "I have had Crohn's since the age of 6 months old and I am now 51 years old. This is the only medicine combined with azathioprine 200mg a day which helps me out. I was on vedolizumab for years before Covid and took myself off it however 2 years later back on it due to constantly having issues with Crohn's. Over the last two years my Crohn's has been really bad but as I have grown up with it all my life I can cope with better than others. The vedolizumab has definitely helped me."

• Mary
• Taken for 1 to 2 years
• September 16, 2022

Entyvio (vedolizumab) for Crohn's Disease "My son started Remicade and did not work , then we started Entyvio and has been on Entyvio for over a year, he had an ileostomy surgery unfortunately his colon had many polyps, this medicine works slow, real slow. It has controlled his symptoms. The side effects on him loss of hair, stuffy nose, his hands shake after the infusion for a few days, joint pains, then they go away. Compared to Stelara which I’m terrified to use based on the horrible side effects depression, mental issues, etc I prefer to have this one, I know some people don’t react to it do good luck ! This illness is uncontrollable!!! Hate it ."

• rano
• Taken for 1 to 2 years
• October 19, 2019

For Crohn's Disease "Very Good Experience with vedolizuma Started at May 2018 and so far (OCT 2019) working fine. My Inflammation markers have dropped and I'm in the normal range. I really hope this drug continues to work for me for a long time. Do get some side effects such as mild joint main and congestion but rather get those than get freaking infections from Remicade and Humira which both only worked for a little bit. Was about to get surgery but this worked out and if this fails I've got a lot of other options.My Crohn's is Mild - Moderate"

• Patient
• Taken for 2 to 5 years
• May 17, 2022

Entyvio (vedolizumab) for Ulcerative Colitis "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."

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

For Ulcerative Colitis "I was severely ill from my diagnosis of ulcerative colitis, had been hospitalised 3 times in 4 months and the Drs 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 Vedoolizumab 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 could’ve avoided prolonged agony and wouldn’t have lost a year of my life trying to get to this point."

• Lucco...
• Taken for 1 to 6 months
• October 20, 2021

For Crohn's Disease "I have been on vedolizumab for 5 months. It has certainly helped me. No more pain, no more rushing to the loo all the time, not daring to go out in case of accidents. The infusions take about 2 hours and haven't caused any side effects as yet. I was very reluctant to start vedolizumab as the brochure they give you about it goes into detail about the side effects, but in the end I was strongly advised by my gastroenterologist to take it , so I stopped arguing and did, now I am so pleased that I did."

• Rose
• May 2, 2021

Entyvio (vedolizumab) for Crohn's Disease "Entyvio did help me took almost 2 years but now they won't help with insurance copay, and I cannot take it any more it is way to expensive, I am really so angry this has happened, I never thought I could not get the meds I need"