Vedolizumab for Crohn's Disease, Maintenance User Reviews

• Mik...
• Taken for 1 to 2 years
• August 3, 2020

Vedolizumab "Taking Entyvio every 8th week. Experiencing extreme fatigue, tiredness, depression, lack of 'drive'/brain tiredness. Sometimes I feel better for the last 2 to 3 weeks of the time period. Due to the Covid-19 situation, I had to wait an additional 2 weeks for my dose in April, and during this period, all these side effects went away."

• Anonymous
• Taken for 1 to 6 months
• May 2, 2022

"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. My 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?"

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

Vedolizumab "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)."

• dig...
• Taken for 5 to 10 years
• January 31, 2025

Vedolizumab "Life changing. Found out I had Crohn's. Got really sick. From 300 pounds to 94 pounds, was taken in for surgery, lower and upper GI was removed. Been taking Entyvio for 8 years. Was removed off Entyvio for two years and now sick again, going in to be scoped. Will know soon if it's grown or if it's still gone. But something is telling me it's back. I pray Entyvio works again."

• Tir...
• Taken for 2 to 5 years
• October 10, 2024

"Two years of vedolizumab, one infusion every 8 weeks. It rapidly brought down the inflammatory component of advanced terminal ileitis and restored the almost obstructed ileocecal valve to functional. But the side effects have steadily become more distressing: ear congestion and brutal tinnitus; eye problems including infection and dryness; debilitating fatigue and weakness. During the two weeks after the infusion, terrible headache, heavy nasal and sinus congestion, and so tired I can hardly function. Meanwhile, the irritability factor hasn’t changed; I’m still unable to eat normal food and require liquid supplements; I’m still in constant deep pain, most likely from scarring around the nerves. The physicians look at the fecal calprotectin levels and various imaging and think it’s a success story. But the quality of my life is quite poor. I guess it spared me from a catastrophic resection and losing the valve."

• Kay...
• Taken for 1 to 6 months
• May 26, 2019

Vedolizumab "Side effects of Entyvio are extreme fatigue. Will not get another one."

• Anonymous
• Taken for 2 to 5 years
• July 23, 2024

Vedolizumab "I've been in remission for years after starting Entyvio. I get infusions every 8 weeks. I haven’t had any side effects."