Just started Vedolizumab for Crohn's , has anyone else used this new biologic??
Posted , 4 users are following.
I've been using Humira for the last 18 months and was ok for 12 months but then Crohn's flared again. I've been put onto a low dose of Mercaptopurine (which seems to be causing itchy skin rash and headaches) and switched biologic to Vedolizumab. I'm due the third Infusion in two weeks then it'll be every 8 weeks after that. I think it's too early to know if it's working, but one things for sure, my body doesn't hurt like it did on the Humira!!
Has anyone else been on this Vedolizumab and if so, how's it been ?? Anything I need to watch out for, or look forward to???
Thanks.
Hannah.
1 like, 5 replies
Anonymous111 IndieHannah
Posted
IndieHannah Anonymous111
Posted
It was more joint pain......knees, hips, shoulders, hands.......even my big toes!!!! So painful and seemingly random. The doctors figured the side effects were manageable given the Crohn's appeared to be under control.
However, managing the pain and difficulties in general activities was hard. To the point that my general ability to function normally was seriously impaired.
The doctors don't seem to acknowledge this........one is expected to just absorb the side effects and carry on. Which I did!!
Hollaka79 IndieHannah
Posted
karen31773 IndieHannah
Posted
I was on Infliximab infusion from 2011 to 2017 also took 50mg mercaptopurine daily unfortunately at beginning of this year it was decided that after having sigmoidoscopy the Infliximab was not working as it should. After the multi disaplinary meeting they thought Vedolizumab which I started in April I had another scope because crp levels were high just few weeks ago ( oh how I hate them) although I have a laugh with my IBD nurse which I think you have to sometimes unfortunately Just before my infusion on 6/10/17 I was really poorly so had to cancel until 13/10 had scope on 16/10 they found out my perianal abcess was back, which they had to drain under anaesthetic thankfully the scope also showed multiple fistulas, so now they dont think Vedolizumab is working as it should not as good as infliximab as the relief was instant with that. I am due to see colorectal surgeon next week who is really into crohns and its effects, but hey Im alive and keep going and have just become a nanna again today to a beautiful grandaughter so life is good and I shouldnt complain even if the medication doesnt work, take care and hope you have better results although it can take a while to start working
Karen x
IndieHannah karen31773
Posted
Thanks for your response. It’s such a shame that the disease has been unresponsive to the biologics. I had no luck whatsoever with Infliximab, whereas the Humira was almost a little miracle. But I have managed to avoid the Mercaptopurine throughout, until now. I’m really uncertain about taking two immunosuppressant drugs..........dealing with the side effects versus managing the disease! Sometimes I can’t help feeling that just managing active Crohn’s through lifestyle choices and diet is just as effective and possibly less harmful than taking all the drugs.
All I know for sure is that I struggle far more on the drugs.......finding it difficult to locate my sense of humour and be in charge mentally. I seem iller on the meds.......yet off them the Crohn’s just persists.....yet it persists on them too!?......seems like the Vedolizumab is the last chance for now.
I wonder if they might try you on Humira........I liked the fact that you can manage it yourself from home and not have to go to the hospital regularly. And I was surprised they switched mine so quickly to the new biologic rather than just double the dose for a while.....maybe it’s about money, who knows?
Anyway, really hope they get things under control for you. It’s great to see the funny side, but I know how miserable things can get. Congratulations on the new granddaughter......always good to have new life around
Hannah