Vedolizumab and Fatigue: What Users Say (Page 2)

• Jen...
• Taken for 1 to 6 months
• September 16, 2018

For Crohn's Disease "I've had Crohn's for 20 years now-worst area is the terminal ileum, and after no response to any other therapies, I finally had to have surgery and a temporary ileostomy that was reversed this year. I've had 2 treatments of Entyvio so far, but I'm already contemplating stopping it or pulling out of the drug trial I'm in. The pain is excruciating, I feel like there's a pinched nerve in my shoulders (alternating between left and right randomly), my back hurts, my head hurts, my joints are stiff and hurt like a Mack truck hit me. I feel overwhelmingly fatigued all day, every day, but can't sleep (even with sleeping aids). And ironically, I have more abdominal pain now and even less of an appetite than I did before. My gut *pun intended* is saying this drug is not for me. But I'm crushed because my last colonoscopy already showed disease activity 6 months post-op. This drug trial was really my last option, and I don't know what to do :("

• Dan...
• Taken for 2 to 5 years
• June 22, 2018

For Ulcerative Colitis "The good: It worked incredibly well for me when I used it every four months. The bad: Now I don't know if this is linked to the drug for sure...but a few months after taking the drug, my blood tests started coming back abnormal. Later in the year, I was diagnosed with PSC (Primary Sclerosing Cholangitis), a form of liver disease. Likewise, there are lots of horrible side effects like sore throat, fatigue, increased joint pains, etc. Due to the weakened immune system, I also got a bunch of infections, especially in hair follicles, which caused severe itchiness. I also got a heart infection (pericarditis), two lots of pneumonia, and an opportunistic lung infection that forced me to permanently cease use of the drug. My consultant told me if I remained on it I would die. So all of these infections are all pretty serious and life-threatening. Only take this drug if you are desperate and have no other options. Bear in mind, as good as the drug can be for treating the bowel, the drug could cost you your life."

• 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."

• Ano...
• Taken for 6 months to 1 year
• June 22, 2025

Vedolizumab for Crohn's Disease "I had minor side effects when I had the initial load doses (fatigue, numb feeling in my mouth), however, when I then switched to the injections at home, the 3rd one left me feeling very sick with fever and chills for 2 days. After consulting with my doctor, we decided we’d go back to the infusions along with taking an allergy medication and steroid before my injection to reduce the risk of a serious allergic reaction. The reason why we decided to give this a try was because my inflammation was reduced to the lowest it had been in 6 years! That’s after trying various other biologics. Given the significant improvement, we decided it was worth at least trying to see if the infusions avoided the side effects I had with the last injection."

• Kay...
• Taken for 1 to 6 months
• May 26, 2019

Vedolizumab for Crohn's Disease, Maintenance "Side effects of Entyvio are extreme fatigue. Will not get another one."