Stelara (Ustekinumab) input welcome

[Crohnadian]

So I saw my GI again today. It's been a month since my last visit and I'm down to 20mg pred from 30mg. We had raised my Humira from every 2 weeks to every week, and I'm also taking LDN. The combination of the 3? Doing nothing. So my GI suggested Stelara (Ustekinumab). It's a new medication he says, approved for psoriasis, but not yet for CD, though apparently he's had good results with it (he only offered up ONE success story and hummed a lot when I had questions. HE clearly knew very little about the drug). I don't like the way he talks, and I don't like the way he treats me like I'm an item. He doesn't care to treat my pain, my nausea, my body aches- nothing. Just the CD. In the meantime I have to drop my studies, can't work, and I'm fed up. I have no energy to do anything, and on a good day I'm like a zombie. He said he has to "make some calls" to see if he can get it, so we'll see. I don't really know what to think.. any thoughts? I'm kind of nervous. I've been non-responsive to Humira and Cimzia, and anaphylactic to Remicade. So biologics clearly haven't been my thing.

 

[GerryK]

Stelera prospects

Hi there,
I know it's a while since your post, I've just joined the forum, and my consultant has just recommended I try Ustekinumab (Stelera). In contrast to your doc as described by yourself, my doc is fantastic, and has had good results with one other CD patient on this drug.
In Ireland, this drug is not approved for CD, so this is purely experimental, hence only one other patient, and I'll have to be signed up for compassionate program, but given my long case history of all medications losing effect (various steroids, then TNF, MAB's etc. Currently Tysabri, also failing after 13 months), he thinks this is a good move.
How are you doing now? have you been on Stelara since October, and is it working for you?
I start on it in january 2012.
Cheers, and hope you are well,
GerryK

 

[Ian]

So you're not part of a trial GerryK? Out of curiosity how does someone get on a compassionate program? Is it something only select hospitals can offer? Hope it works for you .

 

[GerryK]

Crohns trial

Hi Ian
Not part of a trial but I think basically the drug provider can allow use of trial drug in certain cases where it might benefit patient, but patient is not eligible for trial for some technical reason. Not sure if exact details, I just signed up in desperation !
I'm in Ireland and I know regulations are different here.

 

[raechel]

My doc has recommended stelera as well... Has anyone tried it yet?