Ustekinumab (Stelara) for Ulcerative Colitis: we want your views

24 April 2019

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We want to hear from people with moderate to severe Ulcerative Colitis who have used the medicine ustekinumab (also known as Stelara). 

We would also like to hear from people with Ulcerative Colitis who have been treated with other Biologic drugs (such as Infliximab, Adalimumab, Golimumab or Vedolizumab), or Biosimilar drugs (such as Remsima or Inflectra) but for whom they have not worked or are no longer working.  

The National Institute for Health and Care Excellence (NICE) accepted ustekinumab (also known as Stelara) for use in people with Crohn’s Disease in April 2017 and the Scottish Medicines Consortium approved it in July 2017.

The National Institute for Health and Care Excellence (NICE) accepted this drug for use in people with Crohn’s Disease in April 2017 and the Scottish Medicines Consortium approved it in July 2017. 

Now NICE is looking at whether it is clinically and cost effective to prescribe ustekinumab (Stelara) to adults with moderate to severe Ulcerative Colitis, where other treatments have failed.  

Your views are really important in providing unique knowledge about what it's like to live with a condition and can make a huge difference to the final decisions about whether this drug should be widely available for patients around the UK.  

We might use anonymous quotes to help bring our submission to NICE to life but will not share any personal details. We might also use the views you share to inform our submissions to other bodies that make decisions about the availability of medicines in other parts of the UK, such as the Scottish Medicines Consortium or All Wales Medicines Strategy Group

Please share your experiences via email: (Before Thursday 2 May)

When you get in touch, please let us know if you are happy for us to contact you again if we need further information about your experience. 

We would like to know: 

  • What treatment you have had for your Ulcerative Colitis.
  • How Ulcerative Colitis affects your daily life?  
  • If you have had ustekinumab, what has the impact of this been on your symptoms? How has it affected your life (e.g. how you live day to day, family life, relationships and employment)?  
  • What was the most important impact of the drug for you? 
  • How did you find taking the drug treatment? How did it compare to other drug treatments? 
  • If biologics have not worked or stopped working, how did this feel and what alternative treatments have been offered to you?  Have these been successful? 

Ustekinumab (Stelara) is already in use for psoriasis and psoriatic arthritis and for Crohn’s Disease. It works in a different way from other biologic drugs by targeting two specific, naturally occurring proteins which play a key role in inflammatory and immune responses.

The first dose of ustekinumab is by infusion and further doses are by injection (under the skin), which can be self-administered, every 8 or 12 weeks. 

Find out about biologics, biosmilars and other drug treatments

Read how we remove barriers that prevent patients accessing the most effective treatments
For more information about the NICE appraisals process, visit the NICE website