Vedolizumab positive comments?

[overworked1]

Hello, can I ask if anyone is receiving vedolizumab infusions that is having positive effects on their ulcerative colitis? How is it helping? How are you feeling? I'd rather not hear if it has not worked for you or if there has been negative side effects, thanks......positive thinking always helps

[Tinkerbell13]

Hi overworked. Do sympathise with you. Sorry, can't help re the infusions, as don't know about that....have had friends with ulcerative colitis and told it helps greatly to take fish oil and use olive oil for cooking. Also, vip to take probiotics....also to avoid sweets, bleached white flour, processed meat and alcohol, as well as 'allergenic' foods such as wheat, dairy products and corn (?). Sorry not to be more help, but really wanted you to get some feedback and some support. Best wishes, Tinkerbell13

[willow24 Administrator]

Hi, sorry for late reply - iv been in hospital

I used to have infliximab infusions, one of the earlier biologics. I was on this for about 6 yrs and it worked fantastically. kept my crohns pretty much in remission. I am now on humira injections (another biologic) and 3 yrs down the line - no probs (touch wood!) these I can do at home myself so no going to hospital every 8 weeks for infusion.

Like a lot of the medications you will need to have regular blood tests to ensure white cell counts are ok

[overworked1 in reply to willow24]

Thats good to hear, I'm so pleased it works for you. Thanks for the reply

[supernan]

Hi, I have been on infliximab for around 5 years but have recently developed antibodies so have been changed to humira injections. Whilst on infliximab, I had absolutely no problems and felt well. Just now I'm waiting for the humira to kick in, fingers crossed. Hope all goes well for you x

[overworked1 in reply to supernan]

I'm pleased to hear that you had good results. It's my son who is about to start vedolizumab but he's never had either infliximab or humira which are the usual pathway from what I've read. The gastroenterology team are changing him straight from azathioprine and pentasa which had kept him in remission for about 3 and a half years. His last colonoscopy showed moderate to severe pancolitis and they decided to go for vedolizumab , I suppose they know best! He's very optimistic but I've read it has about a 40% success rate which doesn't sound great. I suppose things in the pharmaceutical world move on, it's really good they are investigating new treatments. Good luck with the Humira, keep well 😊

[Lcatwell in reply to overworked1]

I just started humira for my chron's after switching from cimzia. Cimzia gave me the hives that kept getting increasingly worse, lots if fatigue, and swelling at injection site. So far just headaches until today when I noticed my left leg swollen so I will have the nurse come out tomorrow to check me out.

Hang in there as I am better after having a right hemicolectomy.

Lisa Casey-Atwell

[supernan in reply to overworked1]

Hi, in my experience the doctors seem to given the 40% success rate, they told me that when I was going onto infliximab and the same on humira. Hope your son has great success, sending healing hugs xx