Ustekinumab (Stelara)

[lukefarrell]

Hi All

I am going to speak to my GI tomorrow morning after he suggested I could take park in a phase III study of Ustekinumab (Stelara) to treat my most recent crohns flare; in the large bowel and terminal ileum.

From searching the forum there is not that much info regarding the drug.

Has anyone used it to good effect? How is the drug administered and how often? Are there any bad side effetcs? Any further info would be much appreciated.

Many thanks

Luke

 

[kiny]

Are you someone who failed infliximab or humira?

 

[lukefarrell]

No and have never tried either. I have been on azathioprine for about 12/13 years but need to try another method of treatment and the doctor has mentioned Infliximab or Adalimumab which are traditional therapies or Ustekinumab (Stelara) which is currently being assessed in a phase 3 study at the Chelsea and Westminster hospital in London where I live.

 

[kiny]

I'm a bit worried that they don't automatically suggest infliximab or humira for you and tell you to go on a study. I don't know how the study is doing things but usually these kinds of studies use double blind groups and it's possible you get a placebo, i.e. water instead of actual medication. Usually participation in these trials is only for people who have failed all other treatment and are willing to take the chance to be offered an experimental treatment with the risk of getting a placebo.

I don't want you to be taken advantage of, normally you do not go onto trials if you haven't tried conventional medication yet, and you haven't, so I'm wondering why this trial is even on the table for you.

 

[lukefarrell]

thanks for your concern.

However I am very happy with my GI, he is extremely knowledgeable and up to date with all aspects of IBD treatment, care, ongoing issues in the wider medical world etc. He is considered one of the leading UK specialists as a aresult of this so I will be happy to trust his judgement tomorrow whether he recommends Infliximab, Adalimumab or Ustekinumab!

I just wanted to know if anyone else had good experiencs siwth it prior to my doscussion with him. Thanks for your response though Kiny.

 

[lukefarrell]

Hi Kiny - after getting all the info you were right. I didn't fancy the chances of possibly getting a placebo and there is also a 5 week screening process before you even get the first infusion. so starting Humira in 2/3 weeks instead