Vedolizumab for Crohn's Disease User Reviews (Page 2)

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

Entyvio (vedolizumab) "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) "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."

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

Entyvio (vedolizumab) "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."

• Carol
• Taken for 1 to 6 months
• November 8, 2023

Entyvio (vedolizumab) "So far, so good. I am beginning to notice some good changes in my bowels and overall health. This is also the first time I am using this medicine. The Entyvio is given by IV on a rotating basis, sometimes every other week or every month. The Entyvio seems to be working so far, so I am grateful for my doctors recommending Entyvio. I don't want another surgery. I have had a total of 3 and 3/4 feet removed since 1967. I am so done with surgery. LOL! I do know that the Entyvio does make me feel much better. I actually feel much better after the IV of Entyvio. I've only had 4 IVs so far and many more dates ahead. I am looking forward to these. I feel that the additional IVs are going to put this thing in my body to rest, for the rest of my life! I have had no side effects from Entyvio. My body actually feels so much better after the medicine is fully in my body. My body actually is starting to respond to the Entyvio. I can't say this enough, 'Entyvio' is working!"

• Scoocha
• June 26, 2017

Entyvio (vedolizumab) "Two years on it. Now having liver issues. Colon on recent colonoscopy was clear. Endoscopy showed esophageal varicies stage 1. Fiberscore Labs showed stage 4 fibrosis. Fiberscan the same. Fatigue, general and gut pain continues. Weight is stable but can't gain. Energy low. May need a med break."

• Theo
• October 20, 2016

Entyvio (vedolizumab) "Started Entyvio in the middle of a flare up. I've had the most side effects from this one as compared to all past treatments. Frequent moderate-severe sinus headaches. Flushing, hot feeling. Took 9 months before we saw improvement but I was also on budesonide which might have been the cause of the improvement. Unfortunately it just doesn't seem worth it. I've heard better results for UC patients."

• Linds...
• February 8, 2018

Entyvio (vedolizumab) "Just had second treatment. My treatments have been every 2 weeks. Crohns is still the same no pain relief at all. 1 hour after infusion nausea starts, diarrhea, joint and muscle pain, stomach pain, hot flashes, tired but trouble sleeping. Not sure if this is right for me"

• Chris-T
• October 20, 2021

Entyvio (vedolizumab) "I have been on Entivyo for 1 year. I get horrible headaches for about a week after infusion. I have had Crohn's for 35 years, been on every medication and I don't know if I should continue on it. I've had 4 bowel surgeries and my poor body is still in pain and sick everyday. I fight through and try to stay positive but the headaches are really tough. Anyone else have headaches?"

• Fimk
• Taken for 6 months to 1 year
• January 10, 2021

Entyvio (vedolizumab) "I am 67, male, 40 plus years of Crohn's Disease (CD). Several surgeries with only 5 feet of intestines remaining. I have been taking Entyvio for about a year now. It has worked to greatly slow the frequency and urgency of my diarrhea. However the joint pain it caused in me has me debating whether it is worth it. I have never had joint pain before and now I have trouble turning a door knob!"

• JMV
• Taken for 1 to 6 months
• January 5, 2021

Entyvio (vedolizumab) "Entyvio wears off a week or two before next infusion. I begin to get flare symptoms. I’m starting a six week infusion schedule. Otherwise after being on every conceivable biological, antibiotic, 5-ASA’,steroids and TNF blockers with the exception of stelara - entivio seems to work well. Unfortunately unlike Stelara, entivio only works on my gut and not other complications from my crohns."

• Miss...
• March 26, 2021

Entyvio (vedolizumab) "Extreme fatigue, pain in arms and legs, headaches, constipation. Full time job trying to manage these symptoms, getting worse after 3 years of Entivyo. Crohns is under control, but no energy to live life. Doctor says this is the best choice I have. I’m alive, but not living. I may stop Entivyo and take my chances. Tried supplements, no help."

• Shannon
• Taken for 1 to 6 months
• April 26, 2023

Entyvio (vedolizumab) "Entyvio has not improved my symptoms and is a really harsh medication. I am having serious side effects including high blood pressure, blurred vision, back and throat pain, confusion and inability to concentrate, rash on my face, fatigue, and several others. I would not recommend this drug to anyone. I am meeting with my doctor tomorrow to discuss alternative treatment."

• Emano
• Taken for 1 to 6 months
• November 15, 2020

Entyvio (vedolizumab) "I started Entyvio as my first biologic ever for Crohn's Disease. I was TERRIFIED of reactions and side effects. It turned out to be great. I get a headache and tired the day of the infusion and that’s it for me! After my third dose (they say the magic dose) I noticed a vast improvement in my Crohns symptoms! It also drastically decreased my CRP levels in a matter of weeks ! Unfortunately, 14 days and 9 hours after my third dose, my lips started to swell. They are thinking it’s a delayed reaction and taking me off the drug. A chance that the swelling is just an extra-intestinal manifestation of my Crohns (which entyvio does not treat because it’s gut specific) but they don’t want to risk it. I also developed antibodies (apparently no one does!) but they weren’t at a level that I would’ve needed to stop but for the lip swelling. I’m so sad to have to stop entyvio :( it has been great and I’m scared to start something else!"

• Lissa
• December 13, 2016

"Was in remission when I began entyvio, within 90 days I began to become jaundice, it caused severe problems with my eyesight even having bile drain from tear ducts, massive bile fluid retention, changes in liver function, unexplained abscesses, acute disease progression requiring hospitalizations, 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, and 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 companies financial crisis.."

• Mags
• May 28, 2020

"Started Vedolizamab for Crohn's diease 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 ok 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 neck pain bad. 3rd dose not as bad reaction, no Piriton, but also didn't felt as good as doses 1 & 2, feet and legs so swollen, weight increase 9lbs 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 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."

• formi...
• July 25, 2021

Entyvio (vedolizumab) "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 eye lids, 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."

• Never...
• Taken for 1 to 6 months
• September 30, 2021

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

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

Entyvio (vedolizumab) "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."

• steveo...
• Taken for 2 to 5 years
• September 10, 2022

"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 200mg 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."

• Mary
• Taken for 1 to 2 years
• September 16, 2022

Entyvio (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, real 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 ."

• rano
• Taken for 1 to 2 years
• October 19, 2019

"Very Good Experience with vedolizuma Started at 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 main and congestion but 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 - Moderate"

• Lucco...
• 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."

• Rose
• May 2, 2021

Entyvio (vedolizumab) "Entyvio did help me took almost 2 years but now they won't help with insurance copay, and I cannot take it any more it is way to expensive, I am really so angry this has happened, I never thought I could not get the meds I need"

• JenSm...
• Taken for 1 to 6 months
• September 16, 2018

"I've had Crohn's for 20 years now- worst area is the Terminal Ileum & after no response to any other therapies, I finally had to have surgery & a temporary Illeostomy 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 L & R randomly), my back kills, my head kills, my joints are stiff & 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 :("

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

Entyvio (vedolizumab) "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 time 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 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 and 8 or 9."