Vedolizumab

[Bluegirl1948]

Has anyone been on this . and has it worked how quickly does it work , and can I go on holiday to a hot country. Bit worried they want me have to infusion before I go, is there anyone that can give a bit of advice on this please . Thankyou

[HJ10HMO]

That stuff nearly killed me, I guess it works for some but the mention of its name fills me with terror

[Bluegirl1948 in reply to HJ10HMO]

What happened xx

[HJ10HMO in reply to Bluegirl1948]

It knocked out too much of my immune system and gave me cancer, throat, lung and multiple skin cancers

[Bluegirl1948 in reply to HJ10HMO]

Oh my god they don’t tell you that could happen I was told it only goes to you tummy

[Kelly100]

Hi Bluegirl!

Yes my son was on this for a year. It didn’t get him in full remission unfortunately( nothing did sadly) but it did get his inflammation down to a tolerable level so that he could get a bit of normalcy back.

Lots of people have had success with this biologic and I suppose on some sense it is the mildest biologic as it is gut specific. Expect the infusion to last between 45-60 mins. Quite quick compared to infliximab which would take 3 hours. You probably won’t see the full benefit until 12 weeks but should start to see symptoms improve before then.

I can’t see any reason why you shouldn’t be able to travel on holiday.

Have a lovely time and enjoy yourself! X

[Bluegirl1948]

Thankyou for answering I was wondering what side effects I could expect, what’s your son on now if that didn’t work for him , the doctor I saw yesterday said i should see a different ‘s in couple days after having the frost one xxxx ?

[Kelly100]

He’s went through many. Azathioprine, vedo, infliximab, humira none worked on him. His was severe and he ended up having his colon removed. Vedo was the closest to the best quality of life. No side effects except a headache for a few days after infusion. I’m pretty sure my son felt some relief after his second infusion so a month plus in. You could be lucky though and I hope you are. X

[Bluegirl1948]

Thankyou I see a doctor yesterday who gave me the option of having my colon remove instead of having this but I said I would see if this works frist, have you seen the other post I had saying they got skin cancer, lung cancer, and throat, with this it’s really up set me didn’t no that could happen now I in to minds xxx

[Kelly100]

I understand your worry but I really wouldn’t worry too much. Compared to other biologics vedo isn’t associated with cancer/ malignancies as it isn’t a tnf blocker like other biologics that have been associated with cancer. It has the best safety profile of all of them and is gut specific rather than systemic the other poster was definitely sadly unlucky if vedo caused that to happen. Overall you are more at risk at developing colorectal cancer from untreated inflammation than developing it from medication. Biologics and immune modulators do lower your immune system but it’s far more likely to make you more susceptible to virus/colds than cause cancer. You have to do what your comfortable with but I hope I’ve put your mind at rest x

[Bluegirl1948 in reply to Kelly100]

Thankyou so much for telling me all that you have reassured me a lot , and I thank you for getting back to me today , hope your son is a lot better now , keep your fingers cross for me I will let you no how I get on . Lynda xx

[Kelly100 in reply to Bluegirl1948]

Fingers crossed 🤞🤞🤞

[Bluegirl1948]

Can you tell me please did your son bleed even though he was taking a asa and reducing Prednisolone , I see my constant on the six of may just before I go for this drug I hoping she will be able to stop this or will it be the drug, or am I just worrying to much which making me bleed, I sorry to keep asking you these things , should I tell them now or wait till I see her xxx

[Kelly100 in reply to Bluegirl1948]

He never stopped bleeding despite being on numerous medications at the same time. You’ll probably be on steroids at a reducing dose while the vedo kicks in. Let your consultant know you are still bleeding or if it gets worse as they may ask you to go back up on doses to keep you on an even footing. It’s trial and error with this disease and really frustrating but being open and honest with your communication with your team makes a big difference.

What many people find is throwing the kitchen sink at it works best. Which is why you find yourself on multiple medications to get control of the flare. Anything that works is better than a continuous flare which is painful, exhausting and life limiting.

One thing that was really effective with my son was steroid enemas . To the point that he found they helped him more than oral steroids. He was on them for months and got so close to remission on them.

Try not to overthink and worry because yes you are right it could be making things worse. Stress is a massive factor with flare onset. X

[Bluegirl1948]

Thankyou for coming once again I am hoping I am not being a pain , I will wait till I see her and tell her everything, all my worryingly, I only see a bit of blood first thing , and just lately last thing at night, I am not in pain I only go to the loo three or four times a day that why I am hoping this puts me in remission. I can only thank you so much for answering and given me the answers I need right now . Lynda xxxxxx

[Kelly100]

Your more than welcome. It sounds like your pretty mild from your symptoms you describe and vedo will be just the push you need to get you over the line and in remission . X

[Bluegirl1948]

Thankyou for all your input l realised that your son’s condition was far worse than mine and can’t Thankyou enough for taking time to reassure me I hope he is well now

Take care

Lynda xxx