VEDOLIZUMAB FAIL: Has anyone else on... - Crohn's and Colit...

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VEDOLIZUMAB FAIL

HJ10HMO
HJ10HMO

Has anyone else on here had such debilitating side effects from the above drug that they want to give up. I have had two of the loading injections and since the second there has not been a day in the past 3 weeks that I have felt well. I am constantly exhausted, have an abscess the size of an egg on the back of my neck right on the spinal column. I cannot eat for the pain I am getting once digestion starts, cant sleep properly and wake up every hour. Am not a depressive person but I just want to sit and cry, its Christmas and I have no interest at all and all I want to do is sleep. My GP has said to contact IBD team regarding abscess as she wants me to take antibiotic and or go to A and E its that large. All I wanted was to have a few days a week when I had some energy and felt like me but each drug I take seems to make me worse. I am seriously thinking of just walking away from IBD team and going bacvk to taking pred for a week or two when needed and dealing with it myself as I have for the past 7 years. Appreciate any other horror stories of this medication. PS Budesonide did not work for me either.

2 Replies
oldestnewest

Good Morning

It does sound like you are struggling at the moment and the advice to seek help is a good one. The side effects can be horrible and do effect us all so differently .

I have had three loading doses off this and for the first two i was ok, the third which was some five weeks ago. I have felt so tired since ... plus i actually felt unwell for weeks after. unsure if it was side effects or just a bug . My IBD nurse as requested bloods and a stool sample, plus i am due a further dose in January so i am keeping my fingers crossed .

I really am praying this medication helps as you say two days a week feeling relatively normal would be a great result XX

I really hope you get the help and advice you need and go on to have an enjoyable Christmas .

HJ10HMO
HJ10HMO
in reply to Anniemouse

Thanks Anniemouse, as you say I am struggling and waiting for IBD nurse to call back if anyone is at work due to Christmas. I don't know wether to take prescribed antibiotics or just wait and see if I can cope with pain in the neck, due third loading infusion on 28th December so may just have to struggle through until then. Just don't know what to eat as no appetite living on soup, yoghurt and bananas. Having to force this down as feel sick all the time.

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