Generic Name: Entyvio for Crohn's Disease (vedolizumab)
Entyvio for Crohn's Disease Reviews
"I've been dealing with Crohn's for over 20 years. Through most of that time, I've been on oral meds such as Sulfasalazine, Imuran, and Asacol. These meds sort of controlled the symptoms, but I still had flare-ups. Almost 2 years ago, I moved on to Entyvio. Life has been so much better, as I don't have to plan my day around where all the restrooms are along my sales route. My colon actually had beautiful, healthy pink tissue during my last colonoscopy. I would recommend Entyvio to anyone with Crohn's to try before Remicade or Humira, as Entyvio's side effects are fewer."
"I was hesitant to try this drug because of the reviews on this site. I'm not sure why I put more faith into the reviews here than my doctor's and son's advice. I finally tried the drug, and it saved my life."
"My Crohn's was diagnosed in 1978. Started Entyvio in June 2019. Have had the 3 loading doses and am now on the 8-week infusion schedule. Although my Crohn's symptoms have abated, I am experiencing unpleasant side effects: constant joint pain, especially in the neck and shoulders; severe headaches; blurred vision; cuts not healing; hot flashes; chills. Not happy about the side effects, but they are better than the severe abdominal pain and diarrhea."
"My husband started entyvio a year ago at the recommendation of a new GI doctor. 4 months ago he got Giardia, two weeks ago he got Shegella. He is now in the worst crohns flare of his life. The GI doctor at the local hospital said based on the amount of inflammation this drug has never worked. Don’t try this drug! Doctors are only interested in the amount of kickback they are getting from the drug company."
"I started Entyvio about 8 weeks ago for fairly severe Crohn's disease. I have to say I have felt significantly better than I have in years, and each week has yielded better symptom relief. Significantly less urgency and trips to the bathroom overall. I don't love the IV infusion route, but the results have been worth it to me. I am hoping the at-home self-administered injections get released later this year to eliminate the infusion inconveniences. Far better than Humira or Stelara worked for me and with less side effects."
"Started Entyvio for Crohn's disease (CD) - first drug I had tried. It worked very slowly, but I did experience slight improvement. Made it to my 3rd dose. Within 9 mins of my drip for my 3rd dose, my throat closing, face got very hot, turned bright red, heart beat went faint, and had the sensation of passing out (maybe I did, don’t remember it all). Definitely felt like I was dying. 911 had to be called. 2-3 hrs after the second dose, I had the same reaction at home with heavy palpitations, but it would come and go. First dose, I had a really weird sore throat."
"Never again. Severe allergic reaction to 2nd Entyvio IV. I've had Crohn's for 30 years and taken many different meds. I was recently diagnosed with liver cirrhosis F4 and had to stop methotrexate. I also take Apriso. My GI doctor said I should start Entyvio. First infusion went fine. 2 weeks later, I had my 2nd infusion. Within 2-3 minutes, my chest tightened, throat started closing up, my face got extremely hot and throbbing and was swelling quickly. The whites of my eyes turned completely blood red. The IV was immediately stopped and flushed with saline. Tried again with the med going in slower. Immediately, I started having the same symptoms. 3 weeks later, I was given my first IV infusion of Stelara. Within 1 minute of the IV being started, I had the same reactions but worse. I thought I was going to die. I refuse to take any more IVs."
"I have had IBD (Crohn's) for 15 years. Flares only controlled by prednisone. Failed Imuran and 6mp with pancreatitis. Had limited success with Uceris but no great inflammation control. Mesalamine never helped much. Got a new G.I., and he suggested Entyvio after a colonoscopy showed inflammation. Former G.I. was hesitant to use biologics, but I really was ready to try something new. I have had three induction I.V.s. The I.V. is very easy. I live close to the doctor's office, and I am in and out in less than 35 minutes. The only possible side effects are a scratchy throat and some mild itchy skin. Both of these things could be unrelated. The nurse warned me Entyvio is slow to take effect, but I *believe* it is working for me. My inflammation is greatly decreased, and my guts have healed. So... if you are struggling with IBD and the doctor suggests this drug, I would recommend trying it."
"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."
"Entyvio caused a lot of pain to my body. My joints started popping out of place. Started with my toes popping out of socket, I would have to pop them back in a couple times a day for over a month. My hip dislocated, shoulder, fingers, and jaw pop out of socket. I had hundreds of knots form in my back. I ended up being hospitalized for several days due to a partial bowel blockage, this was several months after starting Entyvio so it should've been fully built up in my system. Entyvio was absolutely terrible in all aspects for me and I would never recommend it for anyone. Don't waste your time, money, and health it."
"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 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. 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."
"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."
"This drug has been the best medicine for Crohn's that I’ve tried. I’ve had serious side effects from other immunosuppressant drugs, but not Entyvio since it specifically targets the gut. I have mild fatigue after my infusion, which only started 8 years after I first got on it. It’s been great and I hope it continues to work wonders! In my case, if a drug works, it works at 100%, and if it doesn’t, it’s at 0%, so my Crohn’s symptoms have either been extremely severe (constant hospitalizations/surgeries) or nonexistent. My symptoms are nonexistent on Entyvio. But then again, everybody is different and it may have no effect on some people."
"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. 5 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."
"I have been on it for a little over 1 year. My Crohn's is better, but I now have severe liver disease. I had a CT scan 10 months ago with mild fatty liver. A recent CT scan revealed severe liver disease. I am so annoyed! Be sure to ask questions and do your research. I would have rather lived with Crohn's than with a ruined liver!"
"Have been on entyvio for over a year, without question it has saved my life. I struggled on and off for 30 years my last flare up was the worst, unable to work or function outside the house for 3 years. After a year I am 100 % able to work and enjoy a normal life."
"Have been on entyvio for well over 2 years. Crohns is under control with last colonoscopy showing significant improvement in large intestine. Have some pain now and then but nothing to stop me getting on with life. Only side effect I've experienced is being a little tired in evening after infusion. Fortunately for me I live in the UK and my treatment is covered by NHS."
"The positives: my bowel movements have slowed down considerably. I have not lost weight. Less gut pain and urgency to use 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, gasx and Xantac.) 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 anti-bodies to Humira. Skipped any treatment for weeks, and went into Crohns Hell. (I wanted to stop eating.) No problems during and after injections Did get a mother of a sinus infection when I got 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 Crohns is active!"
"I was on Remicade for several years. I recently switched over to Entyvio. It seemed to be helping, but the benefits only lasted about 6 weeks. My Dr just added Methotrexate to help boost the effectiveness. So far seems to be working better than Remicade. That said, everyone and every case is different. It comes down to you working with your doctor(s) to find the best plan for you. Don't give up, keep trying."
"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!"
"I've been on Entyvio now for nine months. Since I've been on the medicine I only experience Crohn's systems about once every week and a half in the evening around bed time. At that time I have diarrhea but after emptying, I feel fine. I no longer am concerned about going out and eating or leaving the house and having an emergency with diarrhea; however, for the last two weeks plus, I've been fighting cold symptoms and although I maybe a little better, I am beginning to wonder if I will ever get over the cold. After reading the experiences of others, I am wondering if the Entyvio is complicating my recovery."
"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, all over body pain. I have to say the pros outweigh the cons for me."
"I have been on Entyvio for about a year and have had good results, although I did not see any reduction in pain until after the 4th infusion. I was on Humria for 8 years before it stopped working at that point I stopped taking medications for 3 months - that was a mistake. Was in pain all the time. I do have some minor joint pain, but that could be just me aging. I also have a lot of mucus in throat, but that may only be my lifelong struggle with bad allergies. Everyone's body metabolites and reacts differently. Some of reactions that people are having are listed as side effects and to contact dr immediately. Overall I believe this drug is working for me, although I don't like putting it in my body and would like to try something more natural but I am afraid the pain will return."
"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 - Crohns in the mouth), severe fatigue, all over body pain, worsened sinus problems, weird tendon-like pain in hands & feet. all of which got worse and lasted longer which each subsequent infusion. My last infusion's symptoms lasted for weeks!"
"I've been on Entyvio for aggressive Crohn's for 3.5 years and it has been great. It has erased my Crohn's symptoms completely. However, I want to switch to something that doesn't interfere with the immune systems as I have had Chronic Fatigue Syndrome for 4.5 years and can't exercise without getting sick for days. I think that there is a connection to biologics and CFS, which is my cause appears to be caused by the Epstein-barr virus. Lowered immune system, latent virus becomes activated etc."
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