Controlling flare

[newdiagnosis]

Anyone have experience controlling a flare while on stelara? Been in remission for 7 years. I had a flare a few years ago and managed on steroids. This seems severe. Going on 3 weeks. Happened when stelara dosage was extended. Very concerning. Hope I can stay on stelara. Worth asking for a loading dose?

 

[Scipio]

Anyone have experience controlling a flare while on stelara? Been in remission for 7 years. I had a flare a few years ago and managed on steroids. This seems severe. Going on 3 weeks. Happened when stelara dosage was extended. Very concerning. Hope I can stay on stelara. Worth asking for a loading dose?

You are wise to try to hang on to the Stelara as long as possible. The rule of thumb is that the first biologic (whichever one it is) usually works the best and the docs should try everything to keep from switching if they can. The second and third biologics often fail faster and and faster. So getting that first one to continue to work for you is a good idea.

I have heard of people "starting over" with a new loading dose of Stelara, but I have not needed to try it myself. It might be worth a try in your case. In any event, you clearly need to go back to the shorter dosing schedule and never let them try again to extend it.

 

[my little penguin]

Did you go back to Stelara every 4 weeks (or whatever dose was working )?
My kiddo was required to push out Stelara to every 6 weeks
He flared
And was back to normal ish after the second dose at every 4 weeks
In his case he added mostly een and Uceris foam since his rectum was the worst
That was 3 years ago and Stelara is still working
But in his case he requires it every 4 weeks

good luck

 

[newdiagnosis]

Yes I am now on every 4 weeks. I remember similar thing happened years ago and I controlled it. Just afraid it won't work now. Seems a little more symptoms now than my last flare. Don't want to be on oral steroids too long. Entocort doesn't work but I'm hoping Uceris and oral Prednisone will help.
...Well they didn't really extend the dose. I was just doing so well for so long thought I didn't need such frequent dosing. Hopefully I didn't mess this up.

 

[Scipio]

...Well they didn't really extend the dose. I was just doing so well for so long thought I didn't need such frequent dosing. Hopefully I didn't mess this up.

When it comes to a difficult disease like Crohn's, I invoke the old "if it ain't broke don't fix it" rule. "Doing so well for so long" is an argument for continuing with the current therapy, not a justification for changing it.

 

[newdiagnosis]

Yes you are right. Hopefully every 4 weeks injection works again and that I don't have antibodies. May consider doing a loading dose of stelara. Don't want to be on Prednisone for too long.