Hi folks. I'm posting here, as the Crohn's board is comatose to be honest.
I started Stelara last July. The first dose was an infusion given in hospital and was double the maintanence dose. And for reasons too long and tedious to go into, that's still the only dose I have had. However, it did nothing for my symptoms - I mean, literally nothing. There wasn't even a slight improvement that I could make out.
Last December I saw a GI - not my usual one, but she was very good. We agreed that I would give Stelara another try, but I still
haven't gotten around to phoning up the delivery company. I dunno why I've been dragging my feet over this for months. I suppose I was so disappointed with the initial infusion that I just completely lost motivation to carry on with it.
My only other option is surgery and a permanent ileostomy. To be honest, a very very very large part of me is wishing I had never got the first stoma reversed. All those who say chronic pouchitis isn't nearly as bad as UC must not have what I have got because this is certainly as bad as it was pre-surgery. The only difference is I don't get the fevers of death anymore, but otherwise my life revolves around toilets still.
So, does anyone know if Stelara can still work if the initial loading dose didn't do anything?
PS: I've just remembered. A possible complicating factor is that the delivery company screwed up the delivery of the Stelara. I mean, really screwed it up. I suspect it was unrefrigerated for a few hours before they even got it to me - and I only just managed to get the infusion completed before the 8-hour window was up. I did wonder at the time if the Stelara had degraded due to the crappy handling of it. But I couldn't see anyone admitting to this, so I bit my tongue and hoped it would be all right. Not the best idea in retrospect.
Post Edited (NiceCupOfTea) : 1/5/2020 2:26:58 PM (GMT-7)