Entyvio and Fatigue: What Users Say

• Pea...
• March 12, 2021

For Ulcerative Colitis "I’ve had UC for 37 years. I’ve been on Entyvio for 12 months. I chose to stop due to the debilitating side effects. I am in remission now, however, the side effects are not worth it. After my first infusion, I felt I was having a heart attack. The EMTs said my heart was fine, but I was close to having a stroke. Cortisone injections eliminated this symptom. Over 8 treatments, I developed severe bone and joint pain, some hair loss, major skin dryness and bruising, extreme fatigue, extreme chills and sweats, mouth sores constantly, 24/7 nausea and loss of appetite, some tremors, depression, boils appeared including around my eyes. I developed a serious eye infection after the 8th injection. The ophthalmologist said he’s only seen this type of eye infection in chemo patients. My olfactory senses became affected. Food started tasting different and fragrances seemed off. Entyvio did work, but it’s clearly a toxic drug to where the quality of life is impacted severely in my case."

• Uni...
• Taken for 6 months to 1 year
• November 5, 2019

For Ulcerative Colitis "I was referred to try Entyvio shortly into 2018 after being switched off Humira (taking 2 shots weekly). I had tried a majority of products on the market as of that time, and it usually worked for a short period. You do feel some symptoms immediately after the infusion, primarily total fatigue, and you usually sleep the rest of the day... or at least I do. Overall, the drug has done wonders for me as of late. You still really need to watch what you eat and restrain yourself from alcohol, but it’s worth it. I put back on the weight I lost from the flare-up and feel great."

• Ash...
• February 5, 2020

For Ulcerative Colitis "I was diagnosed with ulcerative colitis at the age of 6. I'm 23 now. I was started on Entyvio back in October, it took a while for the effects to really start helping me get over this flare-up. But it's well worth it. I feel alive again, and not just like a ghost who haunts the bathroom. The side effects are a little annoying, like living in a constant state of stuffy/runny nose, sneezing, headaches, and fatigue. The day of the infusion, I will fall asleep immediately and sleep most of the day, and for the rest of the week, I deal with it. At my most recent appointment, my doctor said I had color to my face and I seemed a lot more alive."

• Gum...
• December 19, 2019

For Ulcerative Colitis "I have been taking Entyvio for a year now, and I am doing great. I had UC (ulcerative colitis) for 22 years now. I have tried every medicine out there, nothing worked for long, but with this medicine, I’m fine. The only side effect I experience is fatigue and a rash once in a while, but I love this medicine. I feel human again."

• Did...
• September 10, 2019

For Ulcerative Colitis "UC since 2000. Active working woman. Was on Mezavant with no flares for years. 2018: traveled around the world, got a UC flare back home. Checked for travel disease: NO. Started Entyvio. Intestinal problems gone, and colposcopy was A1. Entyvio side effects kicked in: migraine, burning numbness on feet, hands, lower legs, finger joints popping, difficulty walking on feet, extreme fatigue. All my data works are OK. IRM OK. Vitamin D too low but OK now. I stop Entyvio NOW after 10 months. Back on Mezavant with a higher dose. Will see a neurologist, but I am sure (and my general doctor also, but not my gastro...) symptoms are linked to Entyvio. My general doctor made me keep a journal of daily symptoms for 3 months, food, events, medication. Shows clearly curves of migraine, fatigue, and numbness getting really high for 14-20 days AFTER injection and staying low for the rest of 8 weeks. And back up again. Can’t continue with side effects."

• Fry...
• September 4, 2016

For Crohn's Disease "I have been on Entyvio for 13 months. It doesn't seem to be helping the diarrhea or urgency. I am fatigued all the time. I am having lots of joint pain and weakness (fingers, wrists, toes, ankles, knees). I trip/fall because my ankles roll, I drop things because my fingers won't keep a grasp. I have been tested for RA - negative. I don't think it is working, but my GI wants to try infusing every 4 weeks instead of every 8 weeks. To me, Entyvio is not worth the side effects."

• Cee...
• Taken for 1 to 6 months
• September 8, 2019

For Ulcerative Colitis "I am due for my 4th injection of Entyvio in a few days. Towards the end of the 2nd infusion, I started to feel worn out. Thought it must mean my body is in need of the 3rd. Since the 3rd infusion, I have been suffering with chronic fatigue. It is debilitating, which in turn messes with your mental health. Entyvio has almost eliminated my UC symptoms but at the price of my quality of life. Also experiencing hair loss & breakouts. My G.I. doctor says fatigue isn't a thing or a side effect, my case worker at YOURVANTAGE says it's a common side effect but to get 4 injections before stopping, my GP says maybe take a drug holiday... I'm at a loss as to what to do, but leaning towards stopping."

• AKa...
• Taken for 1 to 6 months
• June 13, 2019

For Crohn's Disease "I have struggled with Crohn's disease for many years. I have been able to lead a normal life with Remicade IV every 8 weeks, it was the best med for me until now. Unfortunately, it stopped working. My GI doctor put me on Entyvio. I'm on my second dose and not happy. I'm very concerned. I'm having symptoms that set me back 15 years. I have nausea, vomiting, diarrhea, joint pain, skin lesions, headaches, blurred vision, and fatigue. I had to take off several weeks of work also. I would not recommend this medication. I'm working with my doctor now for a new plan."

• Cha...
• December 26, 2017

For Ulcerative Colitis "DO NOT TAKE ENTYVIO!!! That is, of course, unless you want your immune system to shut down and be unable to fight off even the littlest common cold. Not to mention the crazy amount of debilitating side effects: headaches, sore muscles, major fatigue, restless leg syndrome, feeling like you want to throw up out of the blue, back pain, and coughing. Oh, and if you do happen to get a cold while you're already experiencing these side effects, you might as well multiply the pain by 3 and prepare for a very long recovery as your body is too weak to fight off any disease. As for my colitis symptoms... Entyvio almost TRIPLED my symptoms!! Constant diarrhea, non-stop abdominal discomfort, and literally you are up all night. AVOID BY ALL MEANS!"

• Ser...
• Taken for 1 to 6 months
• May 28, 2019

For Crohn's Disease "The positives: my bowel movements have slowed down considerably. I have not lost weight. Less gut pain and urgency to use the toilet. The negatives: I feel uncomfortably hot sometimes, fatigue (although I have to say I am getting iron infusions because I’m anemic), gas can be bad (take Protonix, Gas-X, and Xantac). I was on prednisone when I started Entyvio. Prednisone is heaven to me, but it is difficult coming down. I am afraid of this very strong drug, but I developed antibodies to Humira. Skipped any treatment for weeks and went into Crohn's Hell. (I wanted to stop eating.) No problems during and after injections. Did get a mother of a sinus infection when I got the last Entyvio injection early: 6 instead of eight weeks. I am having my eight-week injection soon. We’ll see. If this one doesn’t agree with me, that will be it. But, I have to eat at least and not lose weight fast. I can drop 10 lbs just like that when my Crohn's is active!"

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

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."

• Anonymous
• May 12, 2017

For Crohn's Disease "Very pleased with Entyvio. I've been in remission, and the medication is working very well for me for the last 2.5 years. I do experience bad side effects that last about 24 hours after infusion, including severe fatigue, headache, and all-over body pain. I have to say the pros outweigh the cons for me."

• Jun...
• Taken for 1 to 6 months
• June 6, 2017

For Crohn's Disease "I decided to discontinue after the 4th infusion. Very expensive, which might have been worth it had it improved diarrhea. Instead, with each infusion, ulcers in my mouth flared worse (they were already there - Crohn's in the mouth), severe fatigue, all-over body pain, worsened sinus problems, weird tendon-like pain in hands and feet, all of which got worse and lasted longer with each subsequent infusion. My last infusion's symptoms lasted for weeks!"

• T D...
• Taken for 1 to 6 months
• June 14, 2022

For Ulcerative Colitis "BEWARE! Intravenous Entyvio, 2020. 46 y.o. UC. Tried many medicines, this one destroyed me. First, the doctor did not obtain a 100% full informed consent on the drug, on its risks and safety, studies, etc., instead, he oversold the product. The drug has no more than a 34% effect, it only works for 1/3 of the UC patients, and it comes with an obscure side note to doctors on 'known risk' for PML, i.e., a neurological injury-disease related to MS, i.e., lethal if not urgently attended. I lost my job as a programmer, good career, income, safety, and future, and I have to deal with severe multiple side effects. The doctor never followed an emergency protocol, as advised by the producer. The producer plays safe and lies by omission/transparency to the doctor. The drug is dangerous to produce for use. The immediate side effects were: paralysis, back pain, itchiness, eye infection even today, extreme fatigue, cannot move nor be active, nor deal with daily chores, cannot function at all."

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

For Crohn's Disease "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

For Crohn's Disease "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."

• Sun...
• April 7, 2018

For Crohn's Disease "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."

• And...
• Taken for 1 to 2 years
• July 8, 2021

For Ulcerative Colitis "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."

• Sam...
• Taken for 1 to 6 months
• December 29, 2019

For Ulcerative Colitis "3rd infusion next week of Entyvio seems to be helping the ulcerative colitis (UC), but the attendant proctitis is very much the same (urgency, frequency). No major side symptoms but for serious fatigue. Why was I put on Entyvio before trying another drug?"

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

For Crohn's Disease "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."

• Mis...
• March 26, 2021

For Crohn's Disease "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."

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

For Ulcerative Colitis "Had serum sickness on Remicade due to an 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 the office for infusions when self-injection was going well. The company that produces this drug refused financial assistance. I retired from nursing after 46 years in a hospital setting."

• Anonymous
• Taken for 1 to 6 months
• October 18, 2021

For Ulcerative Colitis "I have received my first three infusions, and my hair is falling out so badly. I have lost at least half my hair. I used to have thick, 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, and 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."

• Kay...
• Taken for 1 to 6 months
• May 26, 2019

For Crohn's Disease, Maintenance "Side effects of Entyvio are extreme fatigue. Will not get another one."