Vedolizumab User Reviews & Ratings (Page 3)

• Serena
• Taken for 1 to 6 months
• May 28, 2019

Entyvio (vedolizumab) for Crohn's Disease "The positives: my bowel movements have slowed down considerably. I have not lost weight. Less gut pain and urgency to use toilet. The negatives: I feel uncomfortably hot sometimes, fatigue (although I have to say I am getting iron infusions because I’m anemic) gas can be bad( take protonix, gasx and Xantac.) Was on prednisone when I started Entyvio. Prednisone is heaven to me, but it is difficult coming down. I am afraid of this very strong drug, but I developed anti-bodies to Humira. Skipped any treatment for weeks, and went into Crohns Hell. (I wanted to stop eating.) No problems during and after injections Did get a mother of a sinus infection when I got last Entyvio injection early. 6 instead of eight weeks. I am having my eight week injection soon. We’ll see. If this one doesn’t agree with me, that will be it. But, I have to eat at least and not lose weight fast. I can drop 10 lbs just like that when my Crohns is active!"

• langewj
• Taken for 6 months to 1 year
• November 30, 2016

Entyvio (vedolizumab) for Crohn's Disease "I was on Remicade for several years. I recently switched over to Entyvio. It seemed to be helping, but the benefits only lasted about 6 weeks. My Dr just added Methotrexate to help boost the effectiveness. So far seems to be working better than Remicade. That said, everyone and every case is different. It comes down to you working with your doctor(s) to find the best plan for you. Don't give up, keep trying."

• Caro
• Taken for 6 months to 1 year
• June 10, 2019

Entyvio (vedolizumab) for Ulcerative Colitis "Neurologist told me Humira caused my chronic daily migraines so GI switched to Entyvio. I was already in remission due to Humira and 6 months later on Entyvio continue to be doing fine. Other than a scratchy throat for the first couple of days after the infusion (and migraines gone!) I have experienced no other side effects. So far I am happy, however once I’ve been on it several years without a flare will truly determine if it is working."

• Conta...
• Taken for 1 to 6 months
• December 21, 2018

Entyvio (vedolizumab) for Ulcerative Colitis "Entyvio has been a miracle for me! I had ulcerative proctitis that spread & my symptoms were terrible especially in the morning & were causing me depression, fear, & withdrawal from people. Within 2 IV doses I noticed a profound reduction of all symptoms. Right now I am 95% symptom free. I have not had any side effects except noticeable hair loss. I’m not sure if the hair loss is from the prednisone I was taking for 3-4 months until a week before I started Entyvio."

• Ally
• Taken for 2 to 5 years
• May 20, 2019

Entyvio (vedolizumab) for Ulcerative Colitis "Have been on vedolizimab for over 2 years now and it has been amazing at eliminating all gut-related symptoms (I have Ulcerative Colitis). But Over the 6 months or so though, I've been experiencing weird and horrendous neurological symptoms. Tingling, crawling and burning as well pain and weakness. Seriously considering trying a new drug."

• Arora
• August 14, 2019

Entyvio (vedolizumab) for Ulcerative Colitis "I am a ulcerative colitis (UC) patient and have a pouch. I was on remicade and recently switched over to Entyvio. I have only had two infusions so far and have also lost a LOT of hair. I couldn't tell if it was due to the Entyvio or because I was flaring. I have had phases where I have lost hair. But nothing like this. Has anyone had this issue when they first started the drug and over time the hair has come back? I have not noticed any improvement in my symptoms, hoping to see some changes once I get my third"

• Big...
• Taken for 1 to 2 years
• August 20, 2019

Entyvio (vedolizumab) for Ulcerative Colitis "Been using Entyvio for two years for Ulcerative colitis. It has not helped my UC. My doctor will not stop giving it to me even though it is doing nothing. Next appointment is next week and I plan to stop using it or find another doctor."

• SZ0PF1
• Taken for 6 months to 1 year
• October 16, 2018

Entyvio (vedolizumab) for Crohn's Disease "I've been on Entyvio now for nine months. Since I've been on the medicine I only experience Crohn's systems about once every week and a half in the evening around bed time. At that time I have diarrhea but after emptying, I feel fine. I no longer am concerned about going out and eating or leaving the house and having an emergency with diarrhea; however, for the last two weeks plus, I've been fighting cold symptoms and although I maybe a little better, I am beginning to wonder if I will ever get over the cold. After reading the experiences of others, I am wondering if the Entyvio is complicating my recovery."

• HadleyE
• Taken for 1 to 6 months
• March 18, 2023

Entyvio (vedolizumab) for Ulcerative Colitis "Started first infusion in November 2022. All bleeding stopped for good within 2 days of first infusion. After 4 infusions I was told after a mini colonoscopy that I was in remission. Each infusion the side effects got better. I felt like a truck ran me over for a week after first infusion. Now after my 4th I get a little achy in the hips and knees that went away after a couple days. I have been able to absorb vitamins and now feel overall healthier."

• June...
• Taken for 1 to 6 months
• June 6, 2017

Entyvio (vedolizumab) for Crohn's Disease "I decided to discontinue after the 4th infusion. Very expensive which might have been worth it had it improved diarrhea. Instead with each infusion ulcers in my mouth flared worse (they were already there - Crohns in the mouth), severe fatigue, all over body pain, worsened sinus problems, weird tendon-like pain in hands & feet. all of which got worse and lasted longer which each subsequent infusion. My last infusion's symptoms lasted for weeks!"

• Anonymous
• Taken for 1 to 2 years
• January 18, 2020

Entyvio (vedolizumab) for Ulcerative Colitis "Developed UC and started Entyvio about 3 years ago. Hair immediately started falling out. Also severe sleeplessness and hot flashes. Days of not sleeping or if I did it would only be for 2 or 3 hours. Had 20 to 30 hot flashes a day in the last year I took it and they would last at least 4 to 5 minutes then I would get really cold. My UC was completely under control but the side effects were more than I could tolerate. Started Humira about 8 months ago but have already had 2 flares. Now I don't know why the Gastro doctor didn't start me on Humira instead of Entyvio."

• Stephen
• September 2, 2019

Entyvio (vedolizumab) for Ulcerative Colitis "I started Entyvio for UC as soon as it hit the market. I became steroid resistant and just started Entyvio as my first biologic as it looked like it would have a better safety profile. Has been great for my UC, with no significant G.I. symptoms. However, after about 2 years started having tremors on awakening and muscle fasciculations. Not sure if from Entyvio or not. Have stopped all other medications and had a MRI, sleep study, EMG, nerve conduction tests. ? Restless leg syndrome. Neurologists so far do no think it is Parkinson’s or ALS. Have had slight progression of symptoms for 2 plus years, but G.I. doctors nor the neurologists think it is related to the Entyvio and think I should continue using it. However, I feel stupid for not trying to go off the medication and starting Remicaid or Humira for a year or 2 and see if symptoms resolve, although scared they my not work or lead to some other complications."

• Private
• Taken for 1 to 2 years
• May 13, 2018

Entyvio (vedolizumab) for Crohn's Disease "I have been on Entyvio for about a year and have had good results, although I did not see any reduction in pain until after the 4th infusion. I was on Humria for 8 years before it stopped working at that point I stopped taking medications for 3 months - that was a mistake. Was in pain all the time. I do have some minor joint pain, but that could be just me aging. I also have a lot of mucus in throat, but that may only be my lifelong struggle with bad allergies. Everyone's body metabolites and reacts differently. Some of reactions that people are having are listed as side effects and to contact dr immediately. Overall I believe this drug is working for me, although I don't like putting it in my body and would like to try something more natural but I am afraid the pain will return."

• jbri
• Taken for 2 to 5 years
• June 15, 2019

Entyvio (vedolizumab) for Crohn's Disease "I've been on Entyvio for aggressive Crohn's for 3.5 years and it has been great. It has erased my Crohn's symptoms completely. However, I want to switch to something that doesn't interfere with the immune systems as I have had Chronic Fatigue Syndrome for 4.5 years and can't exercise without getting sick for days. I think that there is a connection to biologics and CFS, which is my cause appears to be caused by the Epstein-barr virus. Lowered immune system, latent virus becomes activated etc."

• Anonymous
• May 12, 2017

Entyvio (vedolizumab) for Crohn's Disease "Very pleased with Entyvio. I've been in remission and the medication is working very well for me for the last 2.5 years. I do experience bad side effects that last about 24 hours after infusion including severe fatigue, headache, all over body pain. I have to say the pros outweigh the cons for me."

• Anonymous
• Taken for 1 to 6 months
• February 15, 2018

Entyvio (vedolizumab) for Ulcerative Colitis "Been on now for 5 months. Symptoms returned 2 months in. Dr wants to give it a good try so I'm back on Cortiment and awaiting a scope that he only has time for in June. Lost a lot of hair which is somewhat devastating for a woman who wants to feel normal and keep disability invisible. Dizziness and muscle weakness to the point of gym workouts not recovering for days. So now I'm torn bc if I stop the meds and he does a scope in June he could say well we don't know if it worked you didn't give it enough time. It's a mental drain always trying to fix yourself and I think most people here wouldn't buy a fancy car if they won heaps of money but rather diagnostic equipment. If it was possible to see what's really going on in their bodies. The unknown sucks. Getting naturopathic medicine and support and trying ketogenic diet along with fodmap and medical marijuana to help cope with the depression. I hope it's enough to keep me off these meds"

• T DK
• Taken for 1 to 6 months
• June 14, 2022

Entyvio (vedolizumab) for Ulcerative Colitis "BEWARE! Intravenous Entyvio, 2020. 46 y.o. UC. Tried many medicines, this one destroyed me. First, the doctor did not obtain a 100% full informed consent on the drug on its risks and safety, studies, etc., instead he oversold the product. The drug has no more than 34% effect, it only works for 1/3 of the UC patients, and it comes with an obscure side note to doctors on 'known risk' for PML, i.e. a neurological injury-disease related to MS, i.e. lethal, if not urgently attended. I lost my job as a programmer, good career, income, safety and future, and I have to deal with severe multiple side effects. The doctor never followed an emergency protocol, as advised by the producer. The producer plays safe and lying by omission/transparency to the doctor. The drug is dangerous to produce for use.The immediate side effects were ex.: paralysis, back-pain, itchiness, eye infection even today, extreme fatigue, cannot move nor be active, nor deal with daily chores, cannot function at all."

• MAC
• Taken for 1 to 2 years
• March 31, 2018

Entyvio (vedolizumab) for Ulcerative Colitis "This my third medicine we have tried for my colitis I had a severe reaction too remicade after using it for two years. I then was put on cimizia which didn't work. I then was put on Humira which didn't work. This medicine is my last resort and it has saved my life."

• Casey...
• November 13, 2015

Entyvio (vedolizumab) for Crohn's Disease "I have not been on it long enough. But it did control my diarrhea, not the pain. I was told because of my new diagnosis of Irritable Bowl Syndrome along with the Crohn's Disease, they are stopping the infusions to see if the pain is not a side effect from it. This is all I know about it so far. I hope this helps a little."

• Sunda...
• April 7, 2018

Entyvio (vedolizumab) for Crohn's Disease "I've suffered from Crohn's for over 50 years. Experienced major flare-up in May 2017. Taken off current meds and prescribed 20 mgs of prednisone. Health improved immediately. Started tapering down until I was down to 5mg in March at which time started first injection of Entivyo. I am down to 1mg of predisone now. Have had two injections to date and scheduled for a third April, 2018 to be followed by another in June. I realize I have to give the biologic a chance to work but I have not noticed anything positive from the treatment to date. Always fatigued with low appetite and joint pain. Sometime I wonder if it wouldn't be in my best interest to simply go on prednisone and feel good for a few years. My GI is very optimistic regarding Entivyo so we will have to see what happens from here."

• Anonymous
• Taken for less than 1 month
• August 17, 2017

Entyvio (vedolizumab) for Crohn's Disease "Only on my second injection migraine so bad I get nauseous ears ringing hear my heart beat in ears all the time its elevated constantly light hurts my eyes dizzy head goes black for seconds only going bathroom every three days scared to take my next dose"

• Acrexp
• Taken for 5 to 10 years
• November 9, 2019

Entyvio (vedolizumab) for Crohn's Disease "I was put on ENTYVIO after my colon was removed and J pouch surgery and still had symptoms involving the pouch and area just above the pouch. I have been on ENTYVIO for 6 years. I started at 8 week intervals but over the last 2 years have had to go from 8 weeks to 6 weeks now at 4 weeks do to symptoms returning before next dose. Testing showed that at 4 weeks the level of ENTYVIO in my system was far below the recommended level. I hope that it continues to work for me. I started on Remicade in 2005 when I was diagnosed with U. C. I was on it a few years but ended up failing completely to help symptoms. I was then put on Cimzia which I did not respond to at all. I then was put on Humira. I was on it till 2010 when thyroid cancer was found. After thyroid was removed I was put on ENTYVIO. Due to the cancer I can't have imuno modifier medications. From Oct 2010 till early March 2013 I was on oral medication. Azacol I think it was or I was on that prior to the colon surgery."

• Tam
• Taken for 1 to 6 months
• August 21, 2019

Entyvio (vedolizumab) for Ulcerative Colitis "Started Entyvio in November 2018, May 2019 began having muscle pain and fever of unknown origin. Went to emergency room in August 2019 diagnosis with Avascular Necrosis of bilateral femoral head. This type of bone disease is associated with high alcohol consumption and long term high dose steroids use. I have neither been a high consumer of alcohol nor had to use high dose steriods. The doctor are denying its Entyvio but I'm 100% sure it has caused this avascular necrosis of bilateral femoral head . I have been on my medication regime since 2014 without any issues with the exception of my ulcerative colitis being in a flare. I'm stuck because entyvio helps for about 3 weeks."

• Sam
• Taken for 6 months to 1 year
• June 26, 2020

Entyvio (vedolizumab) for Crohn's Disease "Entyvio never worked for me . I never had any joint pain so that was good but I had 7-8 doses until I changed to Xeljanz. Entyvio gave me SEVERE fatigue and not so much on Xeljanz... also seeing improvement now."

• Pleased
• Taken for 1 to 2 years
• May 12, 2021

Entyvio (vedolizumab) for Ulcerative Colitis "After several years on Humira, I finally stopped receiving any benefit from it. So, Entyvio was suggested. I have been receiving Entyvio infusions for about 1.5 years. The medicine worked right away for me and continues to be very effective."