Vedolizumab and Hair Loss: What Users Say

• Reb...
• Taken for 1 to 6 months
• August 24, 2019

Vedolizumab for Ulcerative Colitis "I was on a dual therapy of Entyvio and Xeljanz. I noticed slight hair shedding during the 3 loading doses of Entyvio. The day after the 4th dose, I started losing a TON of hair. Eight weeks later, I have lost almost 90% of my hair and am looking into hair extensions/wigs. I experienced hair loss with both Remicade and Humira, but not to this extent. Hair loss should be listed as a side effect. I am discontinuing Entyvio and am hoping it will be completely out of my system soon. Has anyone else experienced significant hair loss? When did it stop/grow back??"

• Pea...
• March 12, 2021

Vedolizumab 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."

• Mja...
• Taken for 1 to 2 years
• March 10, 2019

Vedolizumab for Ulcerative Colitis "I tried Entyvio after failing on Remicade for moderate to severe ulcerative colitis. The first time, it seemed to help, but I had an insurance issue and had to go on Humira. I lost all of my hair after taking Entyvio, but it was several months later. Humira didn't work at all, so they put me back on Entyvio. Almost 15 months later, it didn't work at all and made the diarrhea even worse. Besides that, I didn't notice any side effects. Well, several months later, all of my hair fell out again, and after a year, it still hasn't grown back. It might be worth trying if it is a last resort, but I wish I had never tried it because I had no curative results or relief, and I am so depressed that I am a bald woman. They need to let people know that permanent hair loss is a possible side effect of Entyvio. They push these drugs to market so fast that people are basically guinea pigs, and long-term side effects are not revealed until years later."

• can...
• April 4, 2020

Vedolizumab for Ulcerative Colitis "I have had UC since 2009. I have tried mesalamine, Imuran, Remicade (for 4 months in 2013, after which I developed antibodies, so I had to stop) and Entyvio (Aug 2019 - Nov 2019). I tried Entyvio in August 2019 after a stint in the hospital in June 2019. By the 3rd infusion, joint pains were unbearable, so after 4 infusions, I stopped. In that time, Entyvio did help my symptoms by maybe 30%. I shed hair on Entyvio, but it has recovered now. 6 months since my last infusion of Entyvio, I still suffer horrible pains in my wrists, ankles, fingers, and elbows at all times of day and night. Usually, one side only, sometimes both sides equally. The bones in my elbows hurt as though they have been badly bruised or someone took a hammer to them. I am waiting for test results to see if I have developed antibodies the same as I did with infliximab."

• Mja...
• September 6, 2019

Vedolizumab for Ulcerative Colitis "I used Entyvio for around 9 months for ulcerative colitis. Not only did I lose all of my hair, 2 years later it has not grown back. I am bald on the top right and entire back of my head. I also lost my eyebrow hair and leg hair. I had no results with this drug, and now I am devastated and depressed from being permanently bald."

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

Vedolizumab 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."

• TJa...
• July 27, 2019

Vedolizumab for Crohn's Disease "Started Entyvio because Dr. said Humira wasn’t controlling my disease based on my last colonoscopy, even though I felt great! A month later, I had a flare and was in the hospital. Five months after the first infusion, my hair started to fall out as if I was receiving chemo! Then I put on 20 pounds and can’t lose it to save my life. Now I’m constipated all the time. And as if this wasn’t enough, the insistent itching began along with the coughing and sneezing. Dr. got tired of hearing me complain and did another scope, and my intestines are worse than they were before! Going to try Stelara next. Unfortunately, Entyvio stays in the system for ages."

• Con...
• Taken for 1 to 6 months
• December 21, 2018

Vedolizumab for Ulcerative Colitis "Entyvio has been a miracle for me! I had ulcerative proctitis that spread, and my symptoms were terrible, especially in the morning, and were causing me depression, fear, and withdrawal from people. Within 2 IV doses, I noticed a profound reduction of all symptoms. Right now, I am 95% symptom-free. I have not had any side effects except noticeable hair loss. I’m not sure if the hair loss is from the prednisone I was taking for 3-4 months until a week before I started Entyvio."

• Aro...
• August 14, 2019

Vedolizumab for Ulcerative Colitis "I am an ulcerative colitis (UC) patient and have a pouch. I was on Remicade and recently switched over to Entyvio. I have only had two infusions so far and have also lost a LOT of hair. I couldn't tell if it was due to Entyvio or because I was flaring. I have had phases where I have lost hair. But nothing like this. Has anyone had this issue when they first started the drug, and over time, the hair has come back? I have not noticed any improvement in my symptoms, hoping to see some changes once I get my third."

• Anonymous
• Taken for 1 to 2 years
• January 18, 2020

Vedolizumab for Ulcerative Colitis "Developed UC and started Entyvio about 3 years ago. Hair immediately started falling out. Also, severe sleeplessness and hot flashes. Days of not sleeping, or if I did, it would only be for 2 or 3 hours. Had 20 to 30 hot flashes a day in the last year I took it, and they would last at least 4 to 5 minutes, then I would get really cold. My UC was completely under control, but the side effects were more than I could tolerate. Started Humira about 8 months ago but have already had 2 flares. Now I don't know why the gastro doctor didn't start me on Humira instead of Entyvio."

• Anonymous
• Taken for 1 to 6 months
• February 15, 2018

Vedolizumab for Ulcerative Colitis "Been on now for 5 months. Symptoms returned 2 months in. Dr. wants to give it a good try, so I'm back on Cortiment and awaiting a scope that he only has time for in June. Lost a lot of hair, which is somewhat devastating for a woman who wants to feel normal and keep disability invisible. Dizziness and muscle weakness to the point of gym workouts not recovering for days. So now I'm torn because if I stop the meds and he does a scope in June, he could say, 'Well, we don't know if it worked, you didn't give it enough time.' It's a mental drain always trying to fix yourself, and I think most people here wouldn't buy a fancy car if they won heaps of money but rather diagnostic equipment, if it was possible to see what's really going on in their bodies. The unknown sucks. Getting naturopathic medicine and support and trying a ketogenic diet along with FODMAP and medical marijuana to help cope with the depression. I hope it's enough to keep me off these meds."

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

Vedolizumab 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."

• 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!"

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

Vedolizumab for Ulcerative Colitis "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."

• Mar...
• Taken for 1 to 2 years
• September 16, 2022

Vedolizumab for Crohn's Disease "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, really 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."

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

Vedolizumab 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."

• Pos...
• Taken for 6 months to 1 year
• June 12, 2024

For Crohn's Disease "I had UC from 1974 and an ileostomy in 1983 and lost my large bowel and rectum. In 2013, I developed Crohn’s disease but it was misdiagnosed as self-harm initially after a skin specialist ruled out Pyoderma Gangrenosum. I developed fistulas and one surfaced on my abdomen, leaking liquid feces. I was in agony and treated badly because of the misdiagnosis. Despite the agony, I was only in the hospital for 3 days. The Community Nurses couldn’t keep packing the wound, which was 14cm deep and leaking constantly. Finally, I was admitted on end-of-life care. My gastroenterologist asked to do a scope but perforated my bowel. After a very long surgery, I lost all but 4 feet of my small bowel. I started on Humira and lost my hair, I had many abscesses over the 8 years on it. I started on Vedolizumab infusions 8 months ago and my skin has cleared up. After infusions, I have hot coughs. I’ve put on 10kg even though I haven’t eaten for 7 years. I live on hospital formula, Hydralyte, and IV drips."