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

• Car...
• Taken for 1 to 6 months
• November 8, 2023

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!"

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

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."

• Sco...
• June 26, 2017

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

• Acr...
• Taken for 5 to 10 years
• November 9, 2019

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 due to symptoms returning before the 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 until 2010 when thyroid cancer was found. After the thyroid was removed, I was put on ENTYVIO. Due to the cancer, I can't have immunomodifier 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."

• Sun...
• April 7, 2018

Vedolizumab "I've suffered from Crohn's for over 50 years. Experienced a major flare-up in May 2017. Taken off current meds and prescribed 20 mgs of prednisone. Health improved immediately. Started tapering down until I was down to 5 mg in March, at which time I started the first injection of Entyvio. I am down to 1 mg of prednisone now. Have had two injections to date and scheduled for a third in April 2018 to be followed by another in June. I realize I have to give the biologic a chance to work, but I have not noticed anything positive from the treatment to date. Always fatigued with low appetite and joint pain. Sometimes I wonder if it wouldn't be in my best interest to simply go on prednisone and feel good for a few years. My GI is very optimistic regarding Entyvio, so we will have to see what happens from here."

• Chr...
• October 20, 2021

Vedolizumab "I have been on Entyvio 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 every day. I fight through and try to stay positive, but the headaches are really tough. Anyone else have headaches?"

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

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 doorknob!"

• The...
• October 20, 2016

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."

• Lin...
• February 8, 2018

Vedolizumab "Just had second treatment. My treatments have been every 2 weeks. Crohn's is still the same, no pain relief at all. One 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."

• Sha...
• Taken for 1 to 6 months
• April 26, 2023

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."

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

Vedolizumab "Entyvio wears off a week or two before the 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, Entyvio seems to work well. Unfortunately, unlike Stelara, Entyvio only works on my gut and not on other complications from my Crohn's."

• Ema...
• Taken for 1 to 6 months
• November 15, 2020

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 Crohn's 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 Crohn's (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!"

• Mis...
• March 26, 2021

Vedolizumab "Extreme fatigue, pain in arms and legs, headaches, constipation. Full-time job trying to manage these symptoms, getting worse after 3 years of Entyvio. Crohn's 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 Entyvio and take my chances. Tried supplements, no help."

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

Vedolizumab "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."

• Mag...
• May 28, 2020

"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

"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 "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 "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 "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 "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."

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

• for...
• July 25, 2021

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 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."

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

Vedolizumab "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."

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

"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."

• ste...
• 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 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."