Good luck Rusty Barr! I hope you have the same success with Stelara that I've had. I've been in remission for about 17 months now, and long may it last!
It means I've been able to live life to the full for a while.
Rusty Barr said...
How long were you on the Stelara until you were in remission? Since you started it, did you take anything in addition to it? …and can you describe in detail what remission means for you? I’ve read many different definitions here of remission. Thanks so much.
I got the initial dose infusion on 1/17/23. Right now I’m happy with where I am at, but I know I could see even more improvement.
My current daily pattern is 1 movement urge, waking me up in the middle of the night, typically around 1 am, which is usually stools….then I go right back to bed and right back to sleep. Then a movement upon waking up first thing in the morning, also stools. Then another movement or 2 within an hour or two after that, that is usually chunky or loose or watery. Then another movement later in the late afternoon or the early evening and this is usually chunky or mush.
That’s still a total of 4 or 5 overall each day, but, The fantastic thing is urgency is almost zero…meaning I can hold it when I feel the urge and I’m not sprinting to a toilet. That is absolutely huge for me.
Hi Rusty Barr,
Sorry, I've just seen this post, as I'm currently travelling in South America. That's what remission means for me - total freedom to live my life in the same way that people without UC do! Thanks to Stelara, at the moment I'm able to travel without any restrictions. I don't need to worry about
where the nearest toilet is.
My faecal calprotectin is completely normal (under 50 at the moment - it's in the thousands when I'm ill), and I have no diarhhoea, blood, pus or urgency.
My bowel movements are generally normal (normal for me) in that I have one bm in the morning (although they're a bit loser than usual at the moment, probably due to the heat, change of diet etc, while I'm travelling),
Without looking back at medical notes (which I don't have with me at the moment) I'm afraid I can't remember how long it took for the Stelara to get me into remission.
I currently just take a Stelara injection once every 3 months, and mezavant (mesalazine) when I remember to take it. I haven't needed any steroids or enemas since I went into remission about
18 months ago .
I really hope you get to the point where you can live your life without thinking about
UC, at least for a few years. After many years living half a life it's incredible to 'have my life back'. I just hope it lasts a good few years before I need to start looking for the next drug.
Post Edited (UCyousee) : 3/1/2023 6:07:46 PM (GMT-8)