Entyvio and Joint Pain: What Users Say

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

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?"

• can...
• April 4, 2020

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."

• 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."

• Pau...
• Taken for 1 to 2 years
• October 19, 2019

For Ulcerative Colitis "I’ve tried just about everything for ulcerative colitis (UC) over the last 15 years. Most meds work for a while and then stop. After 12 months of Humira, which helped somewhat but was inconsistent, I started on Entyvio in April 2018. After the first 2 infusions, I felt much better. I was closer to remission than I have been in years after the week 6 infusion and continued feeling great for about a year. I’ve started having flares again, and my doctor is considering going to more frequent infusions to get me back on track. The only side effect was some joint pain in my hands and wrists. It was severe at times but completely went away once I was on the maintenance doses."

• Ale...
• March 15, 2017

For Ulcerative Colitis "I just wanted to write to thank everyone for their feedback and advice. My gut feeling was to not go in this even though drs told me Entyvio is the best, safest thing (apparently not). I have a friend who's decided to go on it about 3 infusions now and not well. Severe joint pain and sore bones throughout, as well as dealing with a rash and possible other autoimmune conditions that have not been verified yet if it's drug-related. All symptoms are since being on Entyvio. I'm so glad that I followed my instincts and not the drug's/Dr. Hoping for some better options that are safer for all of us!"

• 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."

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

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."

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

For Ulcerative Colitis "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."

• Bra...
• January 19, 2021

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."

• Pri...
• Taken for 1 to 2 years
• May 13, 2018

For Crohn's Disease "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 Humira 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 my throat, but that may only be my lifelong struggle with bad allergies. Everyone's body metabolizes and reacts differently. Some of the reactions that people are having are listed as side effects, and to contact the doctor 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."

• 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."

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

For Ulcerative Colitis "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."

• Fim...
• Taken for 6 months to 1 year
• January 10, 2021

For Crohn's Disease "I am 67, male, 40-plus years of Crohn's disease (CD). Several surgeries with only 5 feet of intestines remaining. I have been taking Entyvio for about a year now. It has worked to greatly slow the frequency and urgency of my diarrhea. However, the joint pain it caused in me has me debating whether it is worth it. I have never had joint pain before, and now I have trouble turning a doorknob!"

• Peg...
• Taken for 6 months to 1 year
• June 22, 2023

For Ulcerative Colitis "My doctor insisted on me taking Entyvio infusions for my colitis. I've been taking infusions for a year now, and now I regret ever taking this drug. It started off with my nose being stuffed up and runny like I had a cold. Then pain started in all my muscles and joints, now I can hardly move. I'm almost disabled with pain. I used to walk every day. Now I can't because of too much pain. Never again, it's not worth it."

• Lin...
• February 8, 2018

For Crohn's Disease "Just had second treatment. My treatments have been every 2 weeks. Crohn's is still the same, no pain relief at all. One hour after infusion, nausea starts, diarrhea, joint and muscle pain, stomach pain, hot flashes, tired but trouble sleeping. Not sure if this is right for me."

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

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."

• Anonymous
• Taken for 2 to 5 years
• March 24, 2022

For Crohn's Disease "I’ve had Crohn’s since 1968. I’ve been on sulfasalazine, prednisone, Bentyl, amitriptyline, Parnate, and Remicade. Prednisone worked, but the side effects impacted my joints. Second surgery in 2006. Started Imuran. It worked okay, but not great. At my age, the doc said lymphoma potential was becoming a possibility. So I started Entyvio. It’s been over two years. I have my life with no issues except getting the infusion every 8 weeks. No side effects. A colonoscopy after 2 years showed over 90% reduction in inflammation. The biggest issue is losing 2 feet at the end of the small intestine, which resulted in needing B-12, D, E, K, and iron. BMS down to two a day unless I have certain spices, fatty meat, or anything deep-fried. No medicine works for everyone, but this one has worked for me."

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

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."

• 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."

• ROJ...
• Taken for 1 to 6 months
• May 11, 2023

For Ulcerative Colitis "Do not use this drug! My joints hurt so badly that I can hardly walk, move, etc. This medication will eat your liver, headaches are beyond pain relievers' help."