Tapering Entocort - Worries

[Sherada]

Hello,

Saw my doctor yesterday and he said he wants me to start tapering off entocort... before being on the drug I was in a lot of pain on and off... I've only been on it about two months at 9mg... today is my first day at 6mg... im so worried that my symptoms are going to come back... I've been pretty happy and normal the past two months but when my symptoms are up i feel like im dying ... i doubt anything has changed in two months that my symptoms wouldnt come back :\

 

[nogutsnoglory]

Is your doctor starting you on a maintenance drug to replace the steroids? I know the fear, coming off is scary but it's really not a safe drug long term. Have immunosuppressants or biologics been discussed with you?

 

[Cat-a-Tonic]

I had some troubles with tapering off of Entocort. I was on 9 mg for 6 weeks, and then my GI asked me to try to taper down to 6 mg. My symptoms started acting up pretty quickly, so my GI put me right back on 9 mg for another 6 weeks. At that time I was able to successfully taper down to 6 mg. If your symptoms reappear, definitely let your doctor know right away and ask if you can go back on 9 mg for awhile longer. It's not good to be on steroid treatment indefinitely, but my GI said it's okay to be on Entocort for up to 9 months in his opinion (I ended up being on it for 7 months total - 3 months at 9 mg and 4 months at 6 mg, and that successfully got me into remission).

I see by your signature that you're on Asacol for maintenance. Given the severity of the symptoms that you've described, I'm wondering if you might need a stronger med. Asacol is very mild and Entocort if fairly mild too. I'm in agreement with NGNG, you may need a stronger medication to keep things in check.

 

[Sherada]

yes... i think you are right CaT/NGNG, but my doctor did not talk about any other drugs to replace the steroid he wants me to have another resection before starting any other drugs he mentioned posibly humira or remicade ... he says the opening between my large and small intestines is smaller in width than a pencil, surrounded by scarring and he could not go into it with the scope during my last colonoscopy.

 

[nogutsnoglory]

Do they think around the scar tissue is more scar or possibly inflammation. I ask because I had surgery before starting a biologic and I regret that because I'll never know if the biologic could have prevented that operation.

If it's definitely mostly scar than surgery certainly makes sense. I would just hate to see you go through it if the meds can help.