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I'm starting Stelara (again)

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Crohn's Disease
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Posted 2/13/2020 4:38 AM (GMT 0)
NiceCupOfTea, that is so stressful! 😕 I’m sorry you’re going thru this! I’m on Humira and it’s def worrying with the refrigeration and delivery - one time I had it delivered to my pharmacy directly, which was an option and where I figured it would be in the best hands, and when I went to pick it up no one could find it....because it had been left on the ground, warm, for 2 days. 🙄 I hope this works out for you and you get a nice break soon! xo
Posted 2/13/2020 5:27 PM (GMT 0)
NCOT- I get the mental state.

Stelara is not the last drug to try. There are several trails to sign up for, not the least is the MAP vaccine which is recruiting (or soon to be recruiting) phase 2 for crohns patients in London. I believe there is also an opportunity for early use of this drug for severely ill patients on compassionate grounds. I'd highly suggest at least getting testing for MAP at this time. Your GI can even prescribe the drugs without even entering the trial. . I'm highly suspect that you too will test positive, in which case you're closer to a solution.

Other trial drugs are Mirikizumab, ozanimod & QBESCO SSI. I was on tap for the latter but Stelara has really kicked in putting me in firm remission. It's been 30 years of this crap for me so I get where you're coming from. Having an end of life treatment plan is very comforting to me. My wish is to have as much control as possible near the end.

@A Sellers -- what dose of Stelara are you on? I wasn't aware that dropping the dose was in option. Are you still in remission? Stelara is severely messing with my knees, so if there's an opportunity to reduce the dosage to save my knees I'd be willing to try it.
Posted 2/19/2020 1:07 AM (GMT 0)
NCOT,

How are you feeling? Any improvements?
Posted 3/2/2020 2:47 PM (GMT 0)
NCOT,

They are starting to test Stelara every 4 weeks in CD patients www.cghjournal.org/article/S1542-3565(20)30205-6/pdf
Posted 3/3/2020 2:07 AM (GMT 0)

ks1905 said...
NCOT,

How are you feeling? Any improvements?

I'm not sure :-/

For the first few weeks, there weren't any improvements. But now I think things are a bit better - less urgency (although it hasn't gone away completely unfortunately) and abdominal discomfort. However, I've had these sort of (very) brief lulls before and I need more time to make sure it isn't that. To be honest, I've been suffering from depression so badly, I haven't been paying that much attention to my Crohn's.

Thanks for the link. I doubt very much I would get funding for Stelara every 4 weeks, even though I suspect I would be one of the ones who would benefit from the increased dose...

@UB - If the Stelara fails, I don't think I have the energy to chase anything else up. I'm thinking of surgery if it does. That guarantees I will never feel another hideous urge ever again. But then I have to get used to a stoma all over again, with all that entails. I don't know if I'm ready for that yet.
Posted 3/5/2020 2:49 AM (GMT 0)
Keep us posted on how you're doing. I've been thinking about you and wondering if the Stelara was working.
Posted 3/17/2020 2:29 AM (GMT 0)
Thanks, Sara. I posted a brief update in the coronavirus thread - getting another dose on the 6th April. Wish I could have it now, as it does feel like the urgency has recently got much worse again... But not even a world-ending virus (note: coronavirus won't end the world) would make them give it to me early, so no point in asking.
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