Weaning off Entocort

[fosamoa]

Hi all, recently diagnosed with Crohns.

Was put on a regiment including entocort, of which the dosage is slowly being decreased, and after a period of remission I've had a moderate to severe flare-up come back just this week. Has anyone else experienced something like this?

My doctor suggested that lowering the dosage is the cause of this return, as my body got used to a higher amount, but that I should continue decreasing it. Are there dangers to staying on it for an extended period of time? Is it because it's an immuno-supressor? Again, there's also the possibility that it's simply the waxing/waning that's symptomatic of Crohns. :sigh:

Also curious about prednisone. If anyone who has tried both drugs, or even just it alone could offer their experiences that would be great.

Cheers, Bobby

 

[tots]

I am on my last week of Prednisone 40-30-20-10 each for 7 days.

I tried Entocort and didnt have much luck with it. I have been on prednisone before and
I have had a hard time tappering off of it. I do not like the prednisone at all except that I am symptom free.

I had my 5th infusion of remicade last week and I am feeling much better...... finally.....

Are you on any other meds? When I read about Entocort it seemed to work better while also taking other meds.

Hope you feel better soon!
Lauren

 

[Jennifer]

Agreed, treating with just steroids doesn't make sense because all it does is treat current inflammation but does nothing to prevent it. Chances are if you aren't taking anything else your symptoms are more likely to return. It is common to experience symptoms when going on lower doses of steroids. Entocort and Prednisone are both steroids but you do not have to wean off of Entocort like you have to with Prednisone. Entocort is generally used for 3 months. Steroids aren't really meant for long term/maintenance use.

How long was your period of remission before you noticed symptoms again? How long were you taking Entocort before the dose was lowered?

 

[fosamoa]

Agreed, treating with just steroids doesn't make sense because all it does is treat current inflammation but does nothing to prevent it. Chances are if you aren't taking anything else your symptoms are more likely to return. It is common to experience symptoms when going on lower doses of steroids. Entocort and Prednisone are both steroids but you do not have to wean off of Entocort like you have to with Prednisone. Entocort is generally used for 3 months. Steroids aren't really meant for long term/maintenance use.

How long was your period of remission before you noticed symptoms again? How long were you taking Entocort before the dose was lowered?

I didn't mention it but yes I am taking Apriso as well. I've been taking the entocort 3-4 months now and I decreased to one pill a day (3-2-1 monthly progression) about 2 weeks ago. I felt remission very soon after I started my regiment and it had lasted until this past week where I've been symptomatic again.

 

[BoyMama2000]

I know this is late. How are you doing? You should not reduce Apriso while weaning off Entocort. The Entocort helps to get to remission more than Apriso but Apriso will hopefully help maintain remission. Also, when you feel a flare while reducing meds, many docs suggest you get off the medication more slowly. For example you were likely on 9mg (3 pills) initially. Then, you reduce to 6mg. If you get a flare there, you may want to alternate doses each day and do 3 pills/2pills/3pills/2pills.... for about a week or two and then try going to 2 pills each day and see how you do. You can do the same thing when going to 1 pill and even alternate days when going from 1 to 0.

Please let us know how you did and what you are doing now.

Best of luck.

 

[fosamoa]

Hello, thanks for the interest. I haven't posted here for a while actually because I was out of the country for the next few moths (was luckily able to get all the medication I needed to go, it was great and I had an amazing time) and I've been feeling pretty good.

I'm currently taking 2 entocort a day still and I'm basically fine. I have minor problems here and there but I can deal with it. I don't think I'm gonna go down to 1 again because I'm scared. My doctor actually said that in some circles, particularly in Europe actually, long term treatment with entocort is considered fine. Maybe I'll keep with this. I'm not sure.

I've also drastically improved my diet. I used to eat out like all the time but now I basically cook all my own meals. I've done it not just for crohns, but also general health and to lose weight and it's been good. I enjoy cooking so it's been fun. And I know longer have desire for fast food and I feel better in general.

 

[BoyMama2000]

My son's GI doc frequently uses Entocort as a maintenance med here in the U.S. as well. We are weaning our son off of it because it has slowed his growth which is how he was diagnosed in the first place. We are going to switch to methotrexate more than likely until he is through puberty. Then we hope to go back to Entocort since he tolerated it well.

Glad you have had success!