So I've been made aware that a new bioogical drug vedolizumab is available, but it seems that it only given to people who have had poor response to remicade/humira. I would really like to avoid these two due to the lymphoma risk and was wondering if it would be likely that I would be allowed to go on vedolizumab staright away? i will ask my IBD nurse when i see her but would like to hear some other thoughts/experiences. Thanks!
Hi Tim I've had UC for 2 years & in all that time had steroids & all other drugs failed to help. I'm now on vedolizumab. Having my 3rd infusion tomorrow. Can't say at this stage whether it's working. There are side effects to all meds. I feel very fatigued. I'm not sure whether they'd fund or put you straight on this if you haven't tried other meds. You would have to discuss your concerns. I hate taking any meds but actually steroids are really bad. I also started a discussion to find out if anyone on vedolizumab & getting side effects but not had any feedback probably because it's only recently been approved & funded.
Thanks, it's good to hear from someone with experience. Did you try remicade/humira before this? I'll discuss it with my nurses. I hope vedolizumab works for you and that you get some feedback!
Hi Tim I've had Ibd UC since May 2013. I'm now 59 years old. It came on at an extremely stressful time in my life. I have tried Humira & infliximab also azathioprine, pentesa (not in that order) been on oral steroids since September 2013,when I lost 2 stone in 6 wks & was very unwell) reducing doses & then increasing when symptoms deteriorate. Never found any meds that have controlled me without steroids so vedolizumab could be last chance as they have been discussing surgery with me.was in hospital just before Christmas. Had my 3rd infusion yesterday whilst reducing my steroids over the weeks from 40mg daily down to 15mg (now) presently my symptoms of more trips to loo & urgency returning so upping my steroids again back to 20mg & to reduce them at a slower rate. Vedolizumab can take longer to show results so it's a wait & see game. I hope that all makes sense. I have felt extremely tired/ drained lately & had quite bad headache last night noticed that before after infusion. But I don't sleep well because of steroids & I'm also nursing a broken wrist! I was lead to believe vedolizumab being used where other meds have not worked. Met lots of people on infliximab where it's working & they're happy with that. My brother in law on Humira for arthritic condition & that really helps him. On trial of vedolizumab with people who had Not had any help from other available drugs 50% people given placebo 50% drug -of those placebo no improvement & of those given vedolizumab it was 50% improvement 50% not. You can look it up & read about it. Hope this all makes sense. Ask the doctors loads of questions & if you can take someone with & notebook to write down answers Good luck for your decision. Barbara.
Anyone looking at trying should be aware of the increased risk of c diff infections for those who are carriers.
I was hoping to start it this week but I have been advised against it as I have recently had a c diff infection.