Vedolizumab User Reviews & Ratings (Page 5)

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

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!"

• Joe...
• Taken for 1 to 6 months
• August 27, 2024

Vedolizumab for Crohn's Disease "It is working for me. I was bleeding rectally for 6 months, and after my first infusion, the bleeding stopped, and I began to start feeling normal again. I am 6 months in, and so far, so good. I didn’t have any side effects as far as I can tell."

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

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."

• Mag...
• May 28, 2020

For Crohn's Disease "Started Vedolizumab for Crohn's disease 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 okay 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 and neck pain bad. 3rd dose not as bad a reaction, no Piriton, but also didn't feel as good as doses 1 & 2, feet and legs so swollen, weight increase 9 lbs 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 the 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."

• Lis...
• December 13, 2016

For Crohn's Disease "Was in remission when I began Entyvio. Within 90 days, I began to become jaundiced. It caused severe problems with my eyesight, even having bile drain from tear ducts, massive bile fluid retention, changes in liver function, unexplained abscesses, and acute disease progression requiring hospitalizations and 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. 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 company's financial crisis."

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

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."

• Hen...
• June 27, 2024

Vedolizumab for Crohn's Disease "Entyvio working well now after 9 weeks with no side effects to speak of. I was ready to try Stelara if the Entyvio didn't kick in by week 10. As I understand it, Entyvio works incredibly well in 15 percent of patients, almost like a cure for Crohn's. Not as great for others who get on it. Such a relief to feel strong and positive again. To be more active without fighting fatigue and inflammation... and those terrible nights. I've started to test it out with some high fodmap foods which I would've never done two weeks ago... with great success. Regular exercise and alternative therapy and oils definitely help to boost the Entyvio, get me through the transition and lift mood. Fingers crossed... and no more prednisone."

• Kev...
• Taken for 2 to 5 years
• March 15, 2022

Vedolizumab for Crohn's Disease "I have been receiving Entyvio infusions for about three years for a Crohn's diagnosis of 40 plus years. I generally feel good but am plagued by frequent bowel movements - two to five times per day. Keeping a normal weight for my height is a challenge, as it is a daily struggle to eat enough to replace nutrients lost during my daily purging. My current colonoscopies show that inflammation in my small intestine is 'stable,' meaning it hasn't improved or gotten worse. When I first went on Entyvio, I was told my Crohn's was in remission. Now I'm questioning whether Entyvio has run its course and it's time to try another treatment. I would rate the effectiveness of Entyvio at about a 4. If the number of bowel movements were to improve, I would rate it close to an 8 or 9."

• Anonymous
• Taken for 2 to 5 years
• March 24, 2022

Vedolizumab for Crohn's Disease "I’ve had Crohn’s since 1968. I’ve been on sulfasalazine, prednisone, Bentyl, amitriptyline, Parnate, and Remicade. Prednisone worked, but the side effects impacted my joints. Second surgery in 2006. Started Imuran. It worked okay, but not great. At my age, the doc said lymphoma potential was becoming a possibility. So I started Entyvio. It’s been over two years. I have my life with no issues except getting the infusion every 8 weeks. No side effects. A colonoscopy after 2 years showed over 90% reduction in inflammation. The biggest issue is losing 2 feet at the end of the small intestine, which resulted in needing B-12, D, E, K, and iron. BMS down to two a day unless I have certain spices, fatty meat, or anything deep-fried. No medicine works for everyone, but this one has worked for me."

• Pee...
• Taken for 2 to 5 years
• March 10, 2024

Vedolizumab "The infusions have helped my pouchitis and cuffitis tremendously. I'm finally down from 20+ bowel movements daily to about 10 and under, depending on the day. I should qualify this though, as I do have to take Imodium daily, taking a minimum of 2 in the am and 2 in the pm, with additional as needed throughout the day. I have these infusions every 8 weeks, and depending on the speed of my clinic's pharmacy, I'm usually in and out in about 2 hours. The downside is that I have developed significant side effects from Entyvio. I now have eczema, which is very frustrating and difficult to treat. I also have daily headaches, and they have never been an issue for me before, so I don't appreciate having to take Tylenol every day. The third frustrating side effect is increased gas. You can really hear the movement in what's left of my small bowel, and it can be very embarrassing when I'm out in public."

• Nev...
• 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 the consultant has said is due to vedolizumab. Many people have success. This has ruined my life."

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

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."

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

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."

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

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."

• for...
• July 25, 2021

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 eyelids, 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."

• Tra...
• Taken for 1 to 2 years
• September 9, 2023

Vedolizumab "Entyvio has changed my life, so please understand that any of my side effects or experiences are 100% worth it for me. I have had this disease my whole life. I was finally diagnosed at 25. I’ve had on-and-off bouts of active, severe disease and long stretches of remission. In 2021, I had the absolute worst flare of disease in my life. I was severely anemic, I could not function due to weakness, diarrhea, and pain. I’m 55 and work hard to not let my health rule my life, but I felt like I was dying. I didn’t want to start a med like Entyvio because I figured I would need to stay on it forever if I did. I had some long conversations and decided it was the best option. I hate the steroids, and I was really too sick to decline the new meds. Within three infusions, I was so much better. I have continued to improve. My side effects are this: flushed skin and rash 1-2 hours after my appointment, I take Benadryl. Headache, body pain, gas, bloating, exhaustion for 48 hours. Entirely worth it."

• Don...
• Taken for 1 to 6 months
• September 27, 2023

Vedolizumab for Crohn's Disease "I started Entyvio some 26 weeks ago and I've experienced relief. I noticed diminishing symptoms from Crohn's disease around week 3. I did experience some discomfort prior to the second infusion at 8 weeks as well as just prior to the third. My gastroenterologist has now scheduled the infusion every 6 weeks and I look forward to full remission."

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

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)."

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

Vedolizumab for Ulcerative Colitis "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

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..."

• ran...
• Taken for 1 to 2 years
• October 19, 2019

For Crohn's Disease "Very good experience with vedolizumab started in 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 pain and congestion, but I'd 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 to moderate."

• Rel...
• 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 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

For Ulcerative Colitis "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

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, 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!"

• ste...
• 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 200 mg 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."