Vedolizumab and Dizziness: What Users Say

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

Vedolizumab 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."

• 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."

• Anonymous
• Taken for less than 1 month
• August 17, 2017

Vedolizumab for Crohn's Disease "Only on my second injection, migraine so bad I get nauseous, ears ringing, hear my heartbeat in ears all the time. It's elevated constantly, light hurts my eyes, dizzy, head goes black for seconds. Only going bathroom every three days. Scared to take my next dose."

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

Vedolizumab 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."

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

Vedolizumab 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."

• Anonymous
• Taken for 1 to 6 months
• May 2, 2022

For Crohn's Disease, Maintenance "Started vedolizumab in December 2021, had two infusions and then started using the Entyvio pen every two weeks. Started to get huge injection site reactions where my leg swelled up and was super itchy, hard as a rock, and hot, so was switched back to the infusions. Since this last infusion about 10 days ago, I feel so tired and sleepy, have nausea every day, and feel dizzy. My eyes are sensitive to the daylight, don't have headaches or that, but feel like a weird sensation throughout my body, plus have a lot of joint pain. I feel like I'm going crazy, and people think I'm a hypochondriac :( Gonna see if I can change to something else because this feeling is awful. Was getting flares every couple of months, but I dunno which is worse. Anyone else feeling this?"