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Vedolizumab for Crohn's Disease User Reviews (Page 3)

Brand names: Entyvio, Entyvio Pen

Reviews for Vedolizumab

Commonly mentioned side effects
  • Mar...
  • Taken for 1 to 2 years
  • September 16, 2022

Vedolizumab "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, really 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."

8 / 10
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  • Luc...
  • Taken for 1 to 6 months
  • October 20, 2021

"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."

10 / 10
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  • Ros...
  • May 2, 2021

Vedolizumab "Entyvio did help me. Took almost 2 years, but now they won't help with insurance copay, and I cannot take it anymore. It is way too expensive. I am really so angry this has happened. I never thought I could not get the meds I need."

4 / 10
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Frequently asked questions

  • Mat...
  • Taken for 1 to 2 years
  • March 22, 2020

Vedolizumab "My husband started Entyvio a year ago at the recommendation of a new GI doctor. Four months ago, he got Giardia, two weeks ago, he got Shigella. He is now in the worst Crohn's flare of his life. The GI doctor at the local hospital said that based on the amount of inflammation, this drug has never worked. Don’t try this drug! Doctors are only interested in the amount of kickback they are getting from the drug company."

1 / 10
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  • Jen...
  • Taken for 1 to 6 months
  • September 16, 2018

"I've had Crohn's for 20 years now-worst area is the terminal ileum, and after no response to any other therapies, I finally had to have surgery and a temporary ileostomy that was reversed this year. I've had 2 treatments of Entyvio so far, but I'm already contemplating stopping it or pulling out of the drug trial I'm in. The pain is excruciating, I feel like there's a pinched nerve in my shoulders (alternating between left and right randomly), my back hurts, my head hurts, my joints are stiff and hurt like a Mack truck hit me. I feel overwhelmingly fatigued all day, every day, but can't sleep (even with sleeping aids). And ironically, I have more abdominal pain now and even less of an appetite than I did before. My gut *pun intended* is saying this drug is not for me. But I'm crushed because my last colonoscopy already showed disease activity 6 months post-op. This drug trial was really my last option, and I don't know what to do :("

1 / 10
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  • TLC...
  • Taken for 1 to 2 years
  • June 23, 2025

Vedolizumab "I've been on Entyvio for 1 1/2 years, at first, it seemed to help. I was able to go shopping without worrying about bathroom trips, but now I'm experiencing more bathroom trips, but in the middle of the night. My belly wakes me up at 2:30, 3:30, by 4:00 I just stay up. So I'm not getting any sleep and my butt is on fire, I'm miserable. I also have been experiencing hot flashes, aches in my joints, and a cough with mucus in the back of my throat. I'm afraid to say anything to my doctor. I hate this disease, I feel like I'll never be normal again."

5 / 10
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  • Aba...
  • Taken for 6 months to 1 year
  • July 16, 2025

Vedolizumab "We receive IV medication once every 8 weeks. My son is 17 years old and has had active Crohn's disease for four years. We've used functional medicine, including cortisone, Remicade, Humira, Imuran, etc. He still uses Imuran."

5 / 10
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More FAQ

  • Pos...
  • Taken for 6 months to 1 year
  • June 12, 2024

"I had UC from 1974 and an ileostomy in 1983 and lost my large bowel and rectum. In 2013, I developed Crohn’s disease but it was misdiagnosed as self-harm initially after a skin specialist ruled out Pyoderma Gangrenosum. I developed fistulas and one surfaced on my abdomen, leaking liquid feces. I was in agony and treated badly because of the misdiagnosis. Despite the agony, I was only in the hospital for 3 days. The Community Nurses couldn’t keep packing the wound, which was 14cm deep and leaking constantly. Finally, I was admitted on end-of-life care. My gastroenterologist asked to do a scope but perforated my bowel. After a very long surgery, I lost all but 4 feet of my small bowel. I started on Humira and lost my hair, I had many abscesses over the 8 years on it. I started on Vedolizumab infusions 8 months ago and my skin has cleared up. After infusions, I have hot coughs. I’ve put on 10kg even though I haven’t eaten for 7 years. I live on hospital formula, Hydralyte, and IV drips."

6 / 10
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  • Bob...
  • Taken for 2 to 5 years
  • September 11, 2024

Vedolizumab "I had to have the infusion time frame decreased. I have it every 6 weeks. Blood tests were done to show I was not retaining enough of it between 8-week infusions. The doctor had to do them and submit to have insurance cover the shorter time frame."

10 / 10
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  • son...
  • Taken for 1 to 2 years
  • June 23, 2023

"My experience with vedolizumab has been varied. The inflammation has stabilized my symptoms to a point I have found less invasive than other treatments. I accept they may all have different side effects for others. I have had Crohn's for around 30 years. I was diagnosed with Crohn's in 2018. Until then, I had no treatment as I was diagnosed with irritable bowel syndrome in 1985. My condition had progressed further than I and the doctors would like. My side effects are mainly terrible teeth pain and excruciating joints. I have never experienced this before; the problem I have just been diagnosed with is osteoporosis and osteoarthritis, which is common in Crohn's patients. Seriously, for myself, I believe it is something to do with my bone problems (I cannot prove it for myself. It seems logical, but I am not a doctor). I do believe it will help some. Unfortunately, in the last ten years, I have had a heart attack and bypass surgery, diabetes type 2, and a mini-stroke. I cannot say if this has affected the side effects?"

5 / 10
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  • KIR...
  • Taken for 5 to 10 years
  • January 24, 2025

"I have been receiving this drug by infusion every 8 weeks for the last 5 years. It has only been effective for the first 6 weeks, after which I suffer from diarrhea and recently have had to have a supply of steroids to resolve a prolonged bout (6 weeks) of it, often uncontrollable."

7 / 10
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  • Ano...
  • Taken for 6 months to 1 year
  • June 22, 2025

Vedolizumab "I had minor side effects when I had the initial load doses (fatigue, numb feeling in my mouth), however, when I then switched to the injections at home, the 3rd one left me feeling very sick with fever and chills for 2 days. After consulting with my doctor, we decided we’d go back to the infusions along with taking an allergy medication and steroid before my injection to reduce the risk of a serious allergic reaction. The reason why we decided to give this a try was because my inflammation was reduced to the lowest it had been in 6 years! That’s after trying various other biologics. Given the significant improvement, we decided it was worth at least trying to see if the infusions avoided the side effects I had with the last injection."

9 / 10
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  • Dan...
  • Taken for 6 months to 1 year
  • October 16, 2018

Vedolizumab "My husband took this drug a couple of years ago for Crohn's, and it caused him to have a stroke. He is lucky to be alive but would never recommend this drug to anyone."

1 / 10
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  • Wor...
  • Taken for 1 to 6 months
  • March 24, 2017

Vedolizumab "Flushing similar to hot flashes, nausea, severe headaches/migraines, increased diarrhea the day of infusion for up to two weeks after."

1 / 10
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  • Nic...
  • January 29, 2021

Vedolizumab "I was nervous to try something other than Remicade, but since the antibodies for Remicade were increasing, I had to try something. This drug has been a good substitute with no noticeable side effects."

10 / 10
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  • ree...
  • February 17, 2017

Vedolizumab "Bowel control increased to approximately 60%. Side effects: runny nose, increased mucus, cough."

4 / 10
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  • The...
  • Taken for 1 to 2 years
  • March 8, 2017

Vedolizumab "Stayed on it for over a year. Took in combination with Entocort. Saw little to no improvement. Gave significant side effects such as flushing, fevers, nausea, chills, severe migraines, etc."

3 / 10
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  • Hab...
  • Taken for 2 to 5 years
  • April 16, 2024

Vedolizumab "After taking Entyvio for 3 years, I feel better. No remission, no pain, no hospital visits to solve the problems. I appreciate the company that's made me so happy after using their product."

9 / 10
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  • Ran...
  • Taken for 6 months to 1 year
  • January 29, 2021

Vedolizumab "This drug saved my life. It gave me 15 years more of life. Remicade had stopped working, and this drug worked."

10 / 10
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  • Ran...
  • Taken for less than 1 month
  • December 31, 2020

Vedolizumab "It’s only been 4 days since my initial Entyvio treatment, but I feel better. Less cramping and fewer bathroom trips. So far, no negative side effects."

10 / 10
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  • Ton...
  • Taken for 1 to 2 years
  • December 5, 2023

Vedolizumab "Brilliant stopped almost all my symptoms, easy to use pen-style injections. Entyvio 108mg injected every two weeks."

10 / 10
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  • WDC...
  • Taken for 1 to 2 years
  • October 12, 2023

Vedolizumab "Infusions are easy; no adverse reactions to them. Crohn's symptoms have much improved. Side effects: it seems to be easy for me to get candida or urinary infections, and hard to get rid of them."

7 / 10
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  • Lit...
  • Taken for 2 to 5 years
  • August 27, 2018

"All the side effects, including breathlessness. It certainly doesn’t make my life better."

3 / 10
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  • Ano...
  • Taken for 2 to 5 years
  • June 22, 2025

"I found it so good. It helped my Crohn's, but I have terrible body pain."

7 / 10
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  • Joh...
  • Taken for less than 1 month
  • April 12, 2023

Vedolizumab "Works well and is easily taken by mouth - have only been on it a short time, but seems to be working well."

7 / 10
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Reviews may be edited to correct grammar/spelling or remove inappropriate content. Reviews appearing to come from parties with a vested interest are not published. This information is not intended to endorse any medication and should not replace the expertise and judgment of healthcare professionals.

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