Ustekinumab

[Bluegirl1948]

l’v just had a change of my infusion from Vedo to Ustekinumab . Vedolizum wasn’t working anymore. I started this new one on New Year Eve, And will self inject every 12 weeks. I’m not sure of the side effects, but when l wipe mainly 1’st stool of the day there blood showing on tissue. Is this normal side affect, or me getting used to the drug. My IBD team say it could take up to 12 weeks to work fully. Is anyone else on this drug , that can help and put mind at rest. I am worried about seeing blood every morning, how long will take to kick in. Many thanks Lynda xxx

[rg1987]

I've been on ustekinumab for 12 weeks now, just about to do the second dose. I had no side effects so far, but they had to put me on prednisolone since my symptoms were getting worse. Now I'm doing well and I'm not sure if it's the prednisolone or the ustekinumab or both. I guess I'll see once I'm off the steroids. They told me that I should do at least 3 doses before they would consider a different biologic as it can take time to start working.

[Bluegirl1948 in reply to rg1987]

Thankyou for replying. How long have you had UC for, l see your back on steroids and I presume it’s a course and when you come off them you’re no whether the infusion has kicked in unaided by the steroids. I have a feeling I might have to go down this route myself. My first self injection is in four weeks time. I’ve had UC for about five years. I started on octasa / Budenfalk Foam , At the moment I am on Pentasa granules and Alendronic Acid tabs and Ustekinumab injections. The Vedo work for about 2 years then about a year ago my condition deteriorated to the extent I’ve been on Prednisolone on and of for about a year, I’ve been taken off them for my own good and been put on Alendronic Acid tabs 1a week to strengthen my bones. Funny enough I went to the doctors today he wants me to stay on Acid tabs and to basically ride my symptoms out for about two injections . I am praying this kicks in without the use of Prednisolone , could you let me know when you’re Prednisolone finishes and weather the Ustekinumab is working. Hopefully all goes well for you. Thanks again for replying.

[rg1987 in reply to Bluegirl1948]

I was diagnosed with UC over 20 years ago, however only a few years ago did it get worse with fequent flare-ups. Anyway, I administered the second dose of ustekinumab yesterday, but I'm still on prednisolone for the next 5 weeks gradually decreasing the dose. Once I'm off the steroids for a few weeks I can give you an update on ustekinumab. Hopefully all goes well for you too.

[Bluegirl1948]

I would be grateful, if you could because there is not many people on this ustekinumab infusion on this site.

Anything you tell me will be valuable.

Meanwhile I hope everything goes well for you. Lynda