Vedolizumab and Tiredness: What Users Say

• Kik...
• Taken for 1 to 6 months
• August 3, 2020

Vedolizumab for Ulcerative Colitis "I was diagnosed with Ulcerative Colitis (UC) in 2003. I landed myself in the hospital during my initial diagnosis, for 1 month. Remicade saved me, but the side effects were awful. Stopped that and was in remission for 15 years. I had a flare in April 2020. I ended up in the hospital during this pandemic. Good times! Anyway, started taking prednisone and my gastro put me on Entyvio. I've had 3 infusions since May 2020 and I'm due for my next infusion in September, but I don't know if I can handle these side effects? My UC is under control, but at what cost? I just turned 40, I'm very active and would consider myself fairly fit/strong. I can barely walk after sitting for 5 minutes. My ankles swell up, my joints hurt to the bone. I'm so exhausted ALL THE TIME. I'm also a teacher and I will be starting back up with school in a few weeks. I can't imagine being on my feet all day. Does anyone else experience this level of joint pain on Entyvio?"

• Car...
• Taken for 1 to 6 months
• May 17, 2018

Vedolizumab for Crohn's Disease "I had the first dose of Entyvio 2/19/18. I've had 3 doses so far. I will not be having any more. I felt better before I started Entyvio. I have gained roughly 15 pounds (do not need the extra weight). Terrible body aches, especially lower back, little pimple-like growths over my body, tired all the time. Nope...this is not for me."

• Liz...
• Taken for 6 months to 1 year
• February 4, 2020

Vedolizumab for Ulcerative Colitis "After 6 days of my first Entyvio infusion, I was symptom-free. My hair had definitely thinned, I don’t care, I feel alive again. I have been on it for 8 months. Life-saving for me. I’m 63, recently diagnosed. Tired after infusion, take 2 Benadryl and go to bed!"

• Gan...
• Taken for 6 months to 1 year
• November 18, 2019

Vedolizumab for Ulcerative Colitis "I have had UC since 2010. I took Lialda for years, then weaned off of it when I moved to Europe for a while. In December 2018, I had my 8 years since diagnosis colonoscopy, and my GI couldn't believe I wasn't in the hospital with how inflamed my colon was. I was in pain, but I learned to deal with it. Now, 7 months after starting Entyvio, I am wondering if the side effects are worth it. My colon is definitely better, but I am constantly tired, my bones hurt, and I always seem to get sick a week or so before every infusion and wonder if I'll even be able to get it. The pain in my joints can be unbearable. I am going to see a rheumatologist to see if they can help me get this under control since my UC is finally in remission."

• Bil...
• Taken for 2 to 5 years
• September 12, 2018

Vedolizumab for Crohn's Disease "Have been on Entyvio for well over 2 years. Crohn's is under control, with the last colonoscopy showing significant improvement in the large intestine. Have some pain now and then, but nothing to stop me from getting on with life. Only side effect I've experienced is being a little tired in the evening after the infusion. Fortunately for me, I live in the UK, and my treatment is covered by NHS."

• Bra...
• January 19, 2021

Vedolizumab for Ulcerative Colitis "This is the first UC drug that I've seen an immediate and significant improvement from. It has given me my life back. After a nasty flare over a long period of time, Entyvio had me feeling better within the first few weeks. I have been in remission for over a year taking this every 8 weeks, this is the longest remission streak I've ever had since being diagnosed 15 years ago. For a day or two after the infusion, I am VERY tired, have some joint pain and headaches, but they are relatively mild compared to a UC flare. I also find if I am sufficiently hydrated before and after the infusion, the side effects are far less severe."

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

Vedolizumab for Crohn's Disease, Maintenance "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."

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

Vedolizumab for Ulcerative Colitis "I have been on Entyvio for 4 years. Pancolitis. It helped right away. I have only had a day in the whole 4 years where I passed blood. This 4th year, I definitely 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."

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

Vedolizumab for Crohn's Disease "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!"

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

For Crohn's Disease, Maintenance "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?"

• Car...
• Taken for 1 to 6 months
• June 18, 2022

Vedolizumab for Ulcerative Colitis "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 such bad immunity. I can't even fight off a common cold. This dirty thing has caused me shingles, and today I've now got chickenpox, 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 it's online, 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 cancers. Stop taking it if you are on it. This is gonna kill us off. The dirty thing!"

• Tra...
• Taken for 1 to 2 years
• September 9, 2023

Vedolizumab "Entyvio has changed my life, so please understand that any of my side effects or experiences are 100% worth it for me. I have had this disease my whole life. I was finally diagnosed at 25. I’ve had on-and-off bouts of active, severe disease and long stretches of remission. In 2021, I had the absolute worst flare of disease in my life. I was severely anemic, I could not function due to weakness, diarrhea, and pain. I’m 55 and work hard to not let my health rule my life, but I felt like I was dying. I didn’t want to start a med like Entyvio because I figured I would need to stay on it forever if I did. I had some long conversations and decided it was the best option. I hate the steroids, and I was really too sick to decline the new meds. Within three infusions, I was so much better. I have continued to improve. My side effects are this: flushed skin and rash 1-2 hours after my appointment, I take Benadryl. Headache, body pain, gas, bloating, exhaustion for 48 hours. Entirely worth it."

• dan...
• Taken for 1 to 6 months
• June 3, 2023

Vedolizumab for Ulcerative Colitis "Started on Entyvio in March 2023. Have had no real side effects, just a little tired the day after the 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."

• JJJ...
• Taken for 1 to 6 months
• May 2, 2025

Vedolizumab "Had severe microscopic colitis for 2 years. Intense pain, 10 kg weight loss, bathroom at least 7 times a day. Tried rifaximin antibiotic, budesonide, cholestyramine, diet. Nothing helped. Got checked for celiac and it's negative. I'm on my fourth dose of Entyvio. It has helped the frequency and urgency and pain. But I am extremely bloated all the time and have a feeling of incomplete bowel movements. I do get tired for the rest of the day after the infusion, and my knees and fingers ache. I'll stick with it longer to see what happens as they say it can take at least 6 months to really see improvement. I've also been diagnosed with sarcoidosis while getting all the tests to go on a biologic."

• Sam...
• Taken for 6 months to 1 year
• April 11, 2020

Vedolizumab for Ulcerative Colitis "5 doses of Entyvio... The exhaustion has completely wrecked my life. Seeing some improvement but not enough to continue with the medication."

• Waa...
• Taken for 6 months to 1 year
• December 28, 2019

Vedolizumab for Ulcerative Colitis "Very bad side effects and no remission, it makes me very tired and have a fever every 2 weeks."