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Flaring question

Looking for others experiences with flares and prednisone.



Some background about me: 27 yo F. Diagnosed with Crohn’s in 2009. Was started on delzicol and then ended up on 6mp in 2010. Was in remission for about 8 years. Literally no symptoms whatsoever. Forgot that I even had the disease aside from taking my pills everyday. In 2018, my GI decided that since I was doing so well he would try me off of the 6mp. Reason being that he didn’t want me to be on it for the rest of my life because it isn’t the safest drug out there. So we stopped the 6mp and exactly a year to the date in 2019 I began a brutal flare. We started entyvio and wasted a lot of time trying to adjust doses and I just had no response to it so we stopped that. Then we started Stelara, which took awhile to work, but eventually did. I was on prednisone for about a year and a half, and was finally weaned off of it in august 2020. Never truly felt as good as I did when I was on 6mp, but I finally thought I was in remission. Now, almost exactly a year off of prednisone (still on Stelara), I just entered another flare. It continued getting worse, and I was just started on 30 mg of prednisone to try and knock it out. This is only my second day on it and my symptoms are 95% gone. However, I feel like this is false hope because prednisone is just a crutch.

So my main question is, has anybody had breakthrough flares while on their medication, did a short course of steroids, and then went back into remission? All of my experience with prednisone has just been feeling great when you first start and then you wean off and all of the symptoms come back, unless you are changing your maintenance meds. Just feeling discouraged because It took so long for me to feel good and now it’s happening again and I’m worried that unless we change my maintenance medication, I will remain in the black hole of flaring. Is it possible to just have breakthrough flares that are short-term in nature and can be cleared up with prednisone?



Sorry for the lengthiness. Although I’ve had the disease for 12 years, this almost feels new to me since majority of the time I’ve been in remission. Really worried for what’s to come next.

Thanks,

K
 

my little penguin

Moderator
Staff member
Have you told your Gi ?
Normally they do bloodwork ,fecal caloprotectin and antibody/med levels
What frequency and dose of Stelara are you on?
Normal is 90 mg every 8 weeks
But higher dose can go to 90 mg every 4 weeks (my kiddo has been on this ) plus mtx (due to juvenile arthritis)
Sometimes you just need a bump in dose
But getting testing helps figure out where you are at
Depending on results
Scopes /imaging

my kiddo flared due to insurance required trial of Stelara at a larger frequency (insurance wanted eight weeks -Gi tried 6 weeks )
Fecal cal went up
So 6 -8 weeks of Uceris foam and switched back to Stelara every 4 weeks with insurance approval

other times he has had steriods for blips and been fine
But sometimes flares were due to the med stopped working as was the case with humira after 5 years

he was dx at age 7 now almost 18
He has been on Stelara since august 2017
 
Everyone is different. I had luck with stopping a flare with just a 7 day prednisone course, and sometimes it took switching to another biologic to go in to remission. You must be "on something" all the time to keep inflammation down.
 
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