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Crohns and difficulty getting off entocort

L

Lmhoffma

Hi everyone,

I've had Crohn's for about 18 years now I'm new here. I thought some info from people who are actually dealing with this disease would be a big help, instead of just listening to doctors :D

I've had a rough time this last year, several flares which I was given entocort 9mg for 8 weeks. This last flare has been a tough one. It began in Nov and the steroids helped after a few weeks. I began weaning off of them in Jan but once I dropped to 6mg my symptoms returned. So I went back up to the 9mg for another 8 weeks. I finally stopped the meds about a week ago and started feeling sick only 2 days later. I spoke to my GI when the symptoms returned and he said its unusual to experience symptoms so soon after stopping the entocort.

Has anyone else experienced this?? I thought my symptoms might pass but they seem here to stay :(

Thanks everyone!
 
J

jennyredsox

Hi! I was on entocort a while ago and while I didn't have symptoms coming off of that (that I can recall, anyway) I have had what you're describing with Prednisone (another steroid, as I am sure you know). I am not sure what to suggest but I might stand to reason the you are particularly sensitive to entocort. I am totally willing to listen, though!!
 
SarahBear

SarahBear

Moderator
Location
Charleston,
Welcome to the forum!

I don't actually think it is that strange to have symptoms again just after stopping a steroid. Sometimes, people still have symptoms while on them, as well.

Are you taking anything other than the Entocort?

:hug: I hope you feel better soon!
 
L

Lmhoffma

Thanks for responding everyone. It's nice to talk to people who understand what you're going through :)

I'm currently on Pentasa, Prevacid, and lomotil as needed. I've been on 6-mp which seemed to help but my liver enzymes become elevated so I was taken off. My GI had mentioned putting me back on it if I became sick again so we'll see. Had some blood work done yesterday to see if I'm having flare, sure feels like it though.
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
Hi and welcome to the forum. I had issues with tapering & stopping Entocort too. I was on 9 mg for 6 weeks - when I tried to drop down to 6 mg, my symptoms started coming back, so I was put back on 9 mg for another 6 weeks. At that point, I was able to successfully drop to 6 mg without issue. I had to stay on 6 mg for about 4 months before I was able to come off of Entocort altogether. So about 7 months total for me on Entocort, but it did finally put me into remission. And as SarahBear said, it is possible to have symptoms while on steroids - I was typically having 1 to 2 bad days per week while on Entocort, and I actually felt better coming off of it at the end of 7 months.

How long have you been on Entocort? Sometimes it takes a long time to induce remission, and since it is a milder med, it's possible you may need something stronger. Did your GI put you back on Entocort since your symptoms came back?
 
L

Lmhoffma

Hi and thank you. I'm so happy you're feeling better :)

I was on 2 full rounds of entocort so about 4 months. I didn't seem to have problem when I tapered to 6mg this time. It wasnt until I stopped all together that I started feeling sick again. I called my GI and he wanted me to have some blood work to see if there is any sign of a flare, it sure feels like one. It's been about a week and my symptoms just seem to be getting worse. Hopefully ill have some answers this week.

Thanks for listening :)
 
SarahBear

SarahBear

Moderator
Location
Charleston,
Lmhoffma said:
Thanks for responding everyone. It's nice to talk to people who understand what you're going through :)

I'm currently on Pentasa, Prevacid, and lomotil as needed. I've been on 6-mp which seemed to help but my liver enzymes become elevated so I was taken off. My GI had mentioned putting me back on it if I became sick again so we'll see. Had some blood work done yesterday to see if I'm having flare, sure feels like it though.
Click to expand...
:hug: I'm sorry you're feeling unwell. How do you feel about moving back up to a stronger medication?
 
L

Lmhoffma

Oh thank you. I felt pretty good when I was on the 6-MP and my GI suggested it at my last visit but I was feeling good so didn't want to take any extra meds. I wouldn't mind getting something, anything that will help.
 
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