Vedolizumab and Headaches: What Users Say

• CLa...
• Taken for 1 to 2 years
• September 18, 2019

Vedolizumab for Ulcerative Colitis "I have suffered from UC for 14 years. I have tried everything, and it would work for a short while, and then I flared up again. Remicade gave me bad side effects. I stopped and tried good diets and natural means for a year. I had an infection that caused my UC to come back, and I was very sick for a few months. My doctor put me on Entyvio, and it took three or four months for the medicine to work. I have been taking it every four weeks for a year, and now I feel excellent. I have not felt this good in years. For side effects, I had one terrible headache, and sometimes it feels like I have a cold. I always lost a lot of hair with prednisone, and after flares, I have my hair back now, gained weight, and feel very strong."

• JDa...
• August 19, 2019

Vedolizumab for Crohn's Disease "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."

• Ash...
• February 5, 2020

Vedolizumab 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."

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

Vedolizumab 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

Vedolizumab 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!"

• Bra...
• January 19, 2021

Vedolizumab 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."

• Anonymous
• May 12, 2017

Vedolizumab 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."

• Chr...
• October 20, 2021

Vedolizumab for Crohn's Disease "I have been on Entyvio for 1 year. I get horrible headaches for about a week after infusion. I have had Crohn's for 35 years, been on every medication, and I don't know if I should continue on it. I've had 4 bowel surgeries, and my poor body is still in pain and sick every day. I fight through and try to stay positive, but the headaches are really tough. Anyone else have headaches?"

• Ema...
• Taken for 1 to 6 months
• November 15, 2020

Vedolizumab for Crohn's Disease "I started Entyvio as my first biologic ever for Crohn's Disease. I was TERRIFIED of reactions and side effects. It turned out to be great. I get a headache and tired the day of the infusion, and that’s it for me! After my third dose (they say the magic dose), I noticed a vast improvement in my Crohn's symptoms! It also drastically decreased my CRP levels in a matter of weeks! Unfortunately, 14 days and 9 hours after my third dose, my lips started to swell. They are thinking it’s a delayed reaction and taking me off the drug. A chance that the swelling is just an extra-intestinal manifestation of my Crohn's (which Entyvio does not treat because it’s gut specific), but they don’t want to risk it. I also developed antibodies (apparently no one does!), but they weren’t at a level that I would’ve needed to stop, but for the lip swelling. I’m so sad to have to stop Entyvio :( it has been great, and I’m scared to start something else!"

• Mis...
• March 26, 2021

Vedolizumab 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."

• Tra...
• Taken for 1 to 2 years
• September 9, 2023

Vedolizumab "Entyvio has changed my life, so please understand that any of my side effects or experiences are 100% worth it for me. I have had this disease my whole life. I was finally diagnosed at 25. I’ve had on-and-off bouts of active, severe disease and long stretches of remission. In 2021, I had the absolute worst flare of disease in my life. I was severely anemic, I could not function due to weakness, diarrhea, and pain. I’m 55 and work hard to not let my health rule my life, but I felt like I was dying. I didn’t want to start a med like Entyvio because I figured I would need to stay on it forever if I did. I had some long conversations and decided it was the best option. I hate the steroids, and I was really too sick to decline the new meds. Within three infusions, I was so much better. I have continued to improve. My side effects are this: flushed skin and rash 1-2 hours after my appointment, I take Benadryl. Headache, body pain, gas, bloating, exhaustion for 48 hours. Entirely worth it."

• dan...
• Taken for 1 to 6 months
• June 3, 2023

Vedolizumab for Ulcerative Colitis "Started on Entyvio in March 2023. Have had no real side effects, just a little tired the day after the infusion and a slight headache the day of. I am in the third quarter of the first 8-week break. Have had some issues during this period with soreness inside my lower abdomen, not sure if it is related. I usually have well-formed stools and less frequent bowel movements, although I have had some diarrhea when I experienced soreness in my abdomen."

• Pet...
• October 28, 2019

For Ulcerative Colitis "I had the worst experience with this medication. My ulcerative colitis (UC) symptoms improved, however, after 48 hours of having the first dose, I started to develop flu symptoms. By day 3 after developing symptoms, my flu was severe. I had all side effects you could think of, these being: headache, high temperature/fever, loss of appetite, feeling sick, dry heaving (which severely strained my muscles and organs and made it worse trying to eat), sore throat, oral thrush, drowsiness, feeling very weak, weight loss (due to little food intake), sore sinuses, backache, chills with high temperature, fast heart rate, bad night sweats, sleeplessness, bad cough, ankle aches when lying in bed, and sore eyes. It has now been over 3 weeks since I had the first dose, and I haven't had another dose since then, yet I am still suffering with a cough and backache. My temperature still varies and gets high later in the day. From my experience with IBD infusions, all I can say is stay away from them! They do more damage than good!"

• Tir...
• Taken for 2 to 5 years
• October 10, 2024

For Crohn's Disease, Maintenance "Two years of vedolizumab, one infusion every 8 weeks. It rapidly brought down the inflammatory component of advanced terminal ileitis and restored the almost obstructed ileocecal valve to functional. But the side effects have steadily become more distressing: ear congestion and brutal tinnitus; eye problems including infection and dryness; debilitating fatigue and weakness. During the two weeks after the infusion, terrible headache, heavy nasal and sinus congestion, and so tired I can hardly function. Meanwhile, the irritability factor hasn’t changed; I’m still unable to eat normal food and require liquid supplements; I’m still in constant deep pain, most likely from scarring around the nerves. The physicians look at the fecal calprotectin levels and various imaging and think it’s a success story. But the quality of my life is quite poor. I guess it spared me from a catastrophic resection and losing the valve."

• Wor...
• Taken for 1 to 6 months
• March 24, 2017

Vedolizumab for Crohn's Disease "Flushing similar to hot flashes, nausea, severe headaches/migraines, increased diarrhea the day of infusion for up to two weeks after."

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

Vedolizumab 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."