Entyvio for Ulcerative Colitis User Reviews (Page 2)

• Joh...
• Taken for 2 to 5 years
• February 20, 2019

"Was on the verge of having colon removed, having tried Humira and other treatments with no relief. After 3 months on Entyvio, started to get results. Symptoms are reduced but not eliminated. Quality of life is much improved. Have been on it over two years."

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

"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."

• Fer...
• Taken for less than 1 month
• November 17, 2016

"I have only had one infusion of Entyvio. Twelve hours after the infusion, the pain started. Severe colic-like pain. Shaking and trembling. Huge swollen legs and feet, which diuretics won't help. Very unsteady on my feet, loss of balance, and joint pain. They told me there were practically no side effects of this drug. I have been deceived."

• Cha...
• December 26, 2017

"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!"

• Bra...
• January 19, 2021

"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."

• Dor...
• Taken for 1 to 6 months
• October 16, 2016

"I thought Entyvio might have been the next best treatment, after I could no longer take Remicade and Humira. I started the injections in May, and my ears started to bleed a week after the injection. After a month on the medication, I have full-body itching. Lastly, after five months on the medication, I am also sneezing and have patches of dark red, angry rashes that are the size of a silver dollar. I would highly recommend close observation on this medication and speak to your doctor right away when any of these side effects occur. In my case, they are only increasing with more exposure."

• Hal...
• February 13, 2017

"I haven't been able to tolerate any drug during the 5 years I have been officially flaring and diagnosed with UC. Despite this, I know I had this nasty thing for the past 20 years. To put it plainly, Humira worked for 2 months, then failed. Now Entyvio worked for 1 month maybe and seems to be placebo now. I oscillate between very bad bloating and constipation and then diarrhea. Since on Entyvio, I am unable to sleep laying down from the pain, and I have no ability to form a normal stool - it's either diarrhea or it's pencil thin or pebble-like. I do not feel like this medicine works and is just another step in the long journey toward surgery. I hear how biologics help people, but I remain unconvinced."

• Kat...
• Taken for 6 months to 1 year
• June 16, 2019

"I have had UC for over 10 years. Was taking Asacol, which worked for years, then stopped working. I have been on Entyvio for 6 months. It has helped my UC, but after a couple months of treatment, my knees were swelling. I am having so much pain in my knees now, I have trouble walking. I am stopping Entyvio, it’s not worth crippling myself."

• Car...
• Taken for 6 months to 1 year
• June 10, 2019

"The neurologist told me Humira caused my chronic daily migraines, so the GI switched to Entyvio. I was already in remission due to Humira, and 6 months later on Entyvio, I continue to be doing fine. Other than a scratchy throat for the first couple of days after the infusion (and migraines gone!), I have experienced no other side effects. So far, I am happy, however, once I’ve been on it several years without a flare, it will truly determine if it is working."

• All...
• Taken for 2 to 5 years
• May 20, 2019

"Have been on vedolizumab for over 2 years now, and it has been amazing at eliminating all gut-related symptoms (I have Ulcerative Colitis). But over the 6 months or so, though, I've been experiencing weird and horrendous neurological symptoms: tingling, crawling, and burning, as well as pain and weakness. Seriously considering trying a new drug."

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

"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."

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

"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."

• Big...
• Taken for 1 to 2 years
• August 20, 2019

"Been using Entyvio for two years for ulcerative colitis. It has not helped my UC. My doctor will not stop giving it to me even though it is doing nothing. Next appointment is next week, and I plan to stop using it or find another doctor."

• Aro...
• August 14, 2019

"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 6 months
• February 15, 2018

"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."

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

"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."

• Had...
• Taken for 1 to 6 months
• March 18, 2023

"Started first infusion in November 2022. All bleeding stopped for good within 2 days of first infusion. After 4 infusions, I was told after a mini colonoscopy that I was in remission. Each infusion, the side effects got better. I felt like a truck ran me over for a week after the first infusion. Now, after my 4th, I get a little achy in the hips and knees that went away after a couple of days. I have been able to absorb vitamins and now feel overall healthier."

• Ste...
• September 2, 2019

"I started Entyvio for UC as soon as it hit the market. I became steroid resistant and just started Entyvio as my first biologic as it looked like it would have a better safety profile. Has been great for my UC, with no significant G.I. symptoms. However, after about 2 years, I started having tremors on awakening and muscle fasciculations. Not sure if from Entyvio or not. Have stopped all other medications and had an MRI, sleep study, EMG, nerve conduction tests. Restless leg syndrome. Neurologists so far do not think it is Parkinson’s or ALS. Have had slight progression of symptoms for 2 plus years, but G.I. doctors nor the neurologists think it is related to the Entyvio and think I should continue using it. However, I feel stupid for not trying to go off the medication and starting Remicade or Humira for a year or 2 and see if symptoms resolve, although scared they might not work or lead to some other complications."

• MAC...
• Taken for 1 to 2 years
• March 31, 2018

"This is my third medicine we have tried for my colitis. I had a severe reaction to Remicade after using it for two years. I then was put on Cimzia, which didn't work. I then was put on Humira, which didn't work. This medicine is my last resort, and it has saved my life."

• Tam...
• Taken for 1 to 6 months
• August 21, 2019

"Started Entyvio in November 2018. In May 2019, began having muscle pain and fever of unknown origin. Went to the emergency room in August 2019, diagnosed with avascular necrosis of the bilateral femoral head. This type of bone disease is associated with high alcohol consumption and long-term high-dose steroid use. I have neither been a high consumer of alcohol nor had to use high-dose steroids. The doctors are denying it's Entyvio, but I'm 100% sure it has caused this avascular necrosis of the bilateral femoral head. I have been on my medication regimen since 2014 without any issues, with the exception of my ulcerative colitis being in a flare. I'm stuck because Entyvio helps for about 3 weeks."

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

"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."

• Ple...
• Taken for 1 to 2 years
• May 12, 2021

"After several years on Humira, I finally stopped receiving any benefit from it. So, Entyvio was suggested. I have been receiving Entyvio infusions for about 1.5 years. The medicine worked right away for me and continues to be very effective."

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

"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?"

• Mkm...
• Taken for 1 to 6 months
• January 14, 2018

"Entyvio has worked wonders for me the entire time I’ve been taking it— I finally feel like my ulcerative colitis is under control, and I can finally breathe again for the first time in years without the anxiety or worry of my condition weighing me down. The infusion itself is the most inconvenient part, but the effects of the drug of severe colitis are definitely worth the inconvenience. I love it."

• Anonymous
• Taken for 1 to 6 months
• June 18, 2022

"Been on Entyvio since December 2021 and have mild to moderate UC, started off with two IV infusions 2 weeks apart then was administering the Entyvio injections myself. I had 6 in total, the first two infusions were fine and the first two self-injections also fine, but started to get injection site reactions where my leg would swell up and become extremely itchy for 2 to 3 days. So my consultant put me back to IV infusion. My UC cleared up great, but now I have started to get these really weird side effects: severe joint and muscle pain. When I wake up, my body is so heavy and sore. I feel super groggy with sticky eyes every morning, can't walk on my left foot now due to tendon pain, also have constant dizziness and balance problems every day, I'm really freaked out by this and having numerous tests done. Stopping the infusions now, going in for a review. It's not worth these side effects and it affects my mental health, so be cautious. Wish I had listened to my partner saying to avoid this treatment."