Entyvio for Ulcerative Colitis User Reviews (Page 3)

• going...
• Taken for 2 to 5 years
• September 6, 2022

"I have been on entyvio for 4 year. Pancolitis. It helped right away. I have only had a day in the whole 4 years where I passed blood. This 4th year I def. have worse sinus problems, joint pain, fuzzy head feeling but manageable. I am kind of more tired this last year on it but I'm 42 going on 43 so maybe age related. on 8 weeks still. It is a good drug. Colon cancer runs in my family so I have to be vigilant. Overall it works for me."

• Andrew
• Taken for 1 to 2 years
• July 8, 2021

"Was diagnosed with Ulcerative Colitis (UC) 3 years ago. Put off entyvio again and again with my doctor but he kept pushing it and I finally gave in after a second hospitalization. I honestly can’t say if it helped my UC much at all. I lasted a little over a year on the infusions but wish I would have stopped it sooner. Tons of fatigue the day of/after infusions that seemed to steadily build with time into constant extreme fatigue. Hair loss (that hasn’t returned), general autonomic/CNS symptoms - migraines, numbness, worsening insomnia, and aching all over my body. I’d lie in bed at night and feel like my brain was on fire. I’ve been off of it a year and although my doc will deny lasting symptoms from the entyvio, a lot of the neurological symptoms have remained. Wish I hadn’t given in to my doc and stayed off of it by any means necessary. I was supposed to start medical school and likely won’t be able to now. Would highly advise against using it."

• Mkm
• Taken for 1 to 6 months
• January 14, 2018

"Entyvio has worked wonders for me the entire time I’ve been taking it— I finally feel like my ulcerative colitis is under control and I can finally breathe again for the first time in years without the anxiety or worry of my condition weighing me down. The infusion itself is the most inconvenient part, but the affects of the drug of severe colitis is definitely worth the inconvenience. I love it"

• Bob
• Taken for less than 1 month
• November 2, 2020

"I’ve had ulcerative colitis for 16 years I just got my first dose of Intivio and 3 days later I had 2 seizures and Dr is denied that Intivio was the reason. Now my brain is foggy and I don’t feel normal. I will now have to go back to mesalamine Beware and ask your Dr a lot of questions as this drug is really unproven. I know a person that had seizures after first dose of Humira and Dr also denied it had anything to do with Humira These are similar compounds. Don’t be an experiment"

• Anonymous
• Taken for 1 to 6 months
• June 18, 2022

"Been on Entyvio since December 2021 and have mild to moderate UC, started off with two IV infusions 2 weeks apart then was administering the Entyvio injections myself. I had 6 in total, the first two Infusions were fine and first two self Injections also fine, but started to get injection site reactions where my leg would swell up and become extremely itchy for 2 to 3 days. So my Consultant put my back to IV infusion. My UC cleared up great but now I have started to get these really weird side effects, severe joint and muscle pain, when I wake up my body is so heavy and sore. I feel like super groggy with sticky eyes every morning, can't walk on my left foot now due to tendon pain, also have constant dizziness and balance problems everyday, I'm really freaked out by this and having numerous tests done. Stopping the infusions now going in for review. Its not worth these side effects and it affects my mental health, so be cautious, wish I had of listened to my partner saying to avoid this treatment."

• KMACK
• December 29, 2017

"I was on the clinical trial scheduled for 30 injections, after the second I no longer had symptoms. I was given a third injection per the trial policy. I was then told I would no longer get the injections since it worked for me. I've been in remission since my last injection. I am still taking mesalamine. It has been several months and no symptoms . Thank God."

• Mary
• Taken for 1 to 2 years
• May 21, 2023

"Took Entyvio for 16 months after having a bad flare-up following covid vax. It took 4 months to induce remission but finally did. I've made the choice to stop the treatments now as I have been non-stop sick for the past 6 months with viral infections and bacterial infections. Developed shingles, numerous colds, flu, gastro bugs, and every little thing that my toddler brings home from creche, only I stay sick for weeks while he bounces back. The slightest cut or graze becomes infected. Really feel like my immune system has been hammered. For anyone who suffers the awful joint pain, I found shiatsu works amazingly. I would recommend taking the drug for a limited time to induce remission. Try out holistic therapies, psychotherapy, and change your diet and then get off this drug. It works, but I'd be worried about long-term effects."

• Donna...
• Taken for 2 to 5 years
• November 9, 2023

"Entyvio has made my life considerably better. Other medications only minimally helped with my condition. My symptoms were so bad, I was not able to work any longer. I also wasn't able to spend time with family & friends. Now I'm able to again. I do experience side effects each time I have my infusion (headaches, fever, nausea & cramping) for the first few days after my infusion; but the 4-5 weeks after are great!"

• jan
• Taken for 6 months to 1 year
• March 5, 2023

"I was having bloody diarrhea daily and anything I ate sent me running for the bathroom. Entyvio has completely stopped my diarrhea. I do have some back pain but I am also 50 years old. I eat healthily (no gluten, limit dairy, and limit red meat) and I take daily walks even if my back hurts. I feel like no matter what there will be side effects you just have to pick what you can live with. I will stay with Entyvio."

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

"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

"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."

• Carla
• Taken for 1 to 6 months
• June 18, 2022

"DO NOT TAKE ENTYVIO!!! I would rather be bleeding from my butt right now than suffer as I have been for the last 3 weeks. I had my first infusion 4 weeks ago and I'm regretting it big time. I have the such a bad immunity . I can't even fight off a common cold. This dirty thing has caused me shingles and today I've now got chicken pox, apparently a common side effect when you look it up. My hair has gone brittle and falling out I'm now wearing a wig I got off amazon. My c section scar has become inflamed and sore. I feel so tired and all I want to do is sleep. I was better off having my flare ups. Also they don't tell you this but its on line, Entyvio can wake up the HPV virus in your body if you have it and you can get cervical cancer from it along with about 6 other ones. Stop taking it if you are on it. This is gonna kill us off. The dirty thing!"

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

"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

"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."

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

"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

"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."

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

"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."

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

"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."

• Deb
• Taken for 1 to 6 months
• September 25, 2021

"Had serum sickness on Remicaide due to extended gap in treatment, after failed treatment to conventional therapy. Rash and fever to Humira. I did very well on SYMPHONI. But....insurance refused to pay for the monthly injections (Medicare/supplement) 3 doses in. So I had fatigue, hot flashes, minimal joint pain. Good results so far. I don't like going to office for infusions when self injection was going well. Company that produces this drug refused financial assistance. I retired from nursing after 46y in hospital setting. X"

• Gary
• Taken for 2 to 5 years
• August 7, 2024

"Excellent for UC. However, I have had a case of terrible shingles (herpes zoster) for which I hadn’t been given a preventative vaccine in Spain. I also have horrific sinusitis/rhinitis, which may or may not be connected. The last three months have been tough. By the way, in Spain, this drug is free on the national health service for all UC patients."

• Kara
• Taken for 6 months to 1 year
• August 20, 2023

"I took Renflexis for 7 months but had a widespread and itchy rash that started in month 3 and just got worse. I was switched to Entyvio and have been taking it for 8 months. I'm not a fan of infusions, but at least this one only takes half an hour. I haven't had any more rash problems. I still have bleeding occasionally but no bad cramping. I got a strange, bad headache after the first few doses. It was in the back of my head and ran down my neck, shoulders, and arms. Now the only side effect I experience is tiredness. It's the worst right after the infusion. I know to go straight home and rest for the rest of the day. I'm okay with taking Entyvio for now. Too bad it doesn't help my chronic, severe eczema. It would be nice to have some biologics approved by insurance companies that do double duty for those of us who have more than one autoimmune issue. I do appreciate the company's financial assistance program."

• 77...
• Taken for 5 to 10 years
• August 24, 2024

"On Entyvio for 7 years. Tried Humira previously, and it did not work. Entyvio has worked well for me. I still have some mild UC symptoms from time to time. I plan to stick with Entyvio until it doesn't work anymore."

• snowman
• Taken for 6 months to 1 year
• March 12, 2024

"I tried two other meds before my doctors found this. They were not good experiences. I've had good infusions with Entyvio. Years ago, I did prednisone and Sulfasalazine. I hated it. What to do? Just hang in there. The Entyvio is working great."

• Jes
• Taken for 6 months to 1 year
• October 23, 2019

"30 years of ulcerative colitis. After just 2 months, I was symptom-free, and last colonoscopy, I was told my colon was fine. Gave me my life back."

• Anonymous
• Taken for 2 to 5 years
• December 30, 2016

"Entyvio has been miraculous. Very close to getting my colon taken out, we decided to try Entyvio. After using Remicade, Humira, and many other options, it's the only thing that's worked for me."