Hi :)

[Stephienc]

Hello all,

I am new to the forum hoping to find others with Crohns that have taken part in or are taking part in a clinical trial with the drug Ustekimab, also known as Stelara. More importantly i wanted to share with you my experience on this treatment so far. I was only diagnosed in January 2012 and was put straight onto Prednisilone. After reacting badly to this I was tried on Azathioprine. After being hospitalised for a dangerous reaction to this (pancreatitus) I was put back on Pred and eventually suggested to be put forward for a trial with the drug used to treat psoriasis, Ustekinumab. Being classed as a severe crohns patient, i qualified for the trial and had the treatment administered at the hospital through fusion and injection every 4 weeks.

I cant speak highly enough of the results this trial has had on me. I now notice almost none of my crohns related symtoms (using the toilet, tiredness etc) and feel so 'normal' compared to how i have suffered. If anyone has been recommended this trial i would say please go for it, its been amazing for me so far. Has anyone else had results from this trial?

 

[Angrybird]

Hello and welcome to the forum

I do not have any experience or knowledge myself about this med but follow this wiki link we have and it will show you our info about it and will point you to previous threads where it has been discussed: http://www.crohnsforum.com/wiki/Stelara-Ustekinumab. I am pleased that you are noticing improvement on this, I take it the docs are doing certain tests to confirm that disease activity is lessening as well? Have they ever checked any od your vitamin levels? Out of interest why did they point you towards this without trying the other meds more commonly available for treatment of crohn's? I notice you are also based in/near Cambridge, which consultant are you under?

I will be keeping fingers crossed that things continue on the right path for you with this.

AB
xx

 

[David]

Hi Stephienc and welcome to the community!

Thanks for sharing your story and experiences with Stelara. I'm so pleased it has done well for you. Hopefully it gets approved soon so that there is one more medication in the arsenal that can help people with IBD.

Please keep us updated on your progress.