6 Days into taper on Entocort

Gloria · Post by **Gloria** » Mon Nov 08, 2010 1:03 am

Rich,

I'm with everyone else on the Entocort dosage. I've been on 3 pills a day for all but 30 days since March. I think (I hope) I've finally gotten a handle on all of my intolerances because I'm doing better this time than I did all the other times. I was and am eager to reduce the Entocort to see if my dietary restrictions were working, but I've always had the problems return, even after being off of it for weeks. Listen to Grannyh; she's the most experienced user of Entocort on this board.

I also have lost a lot of weight, especially for someone my size. My solution has been to count my calorie intake and make sure I eat a minimum number of calories each day. Even if I'm not hungry, I will eat something at night to make my quota. I add the necessary calories by eating carbohydrates. You can look at the list of foods I pack for trips to see which ones I eat. I haven't gained much of my weight back, only 2-3 pounds, but at least I've stopped losing weight.

Good luck with getting back on track. This is a journey and it sometimes doesn't have any simple solutions.

Gloria

grannyh · Post by **grannyh** » Mon Nov 08, 2010 6:44 am

I once asked my GI doc if anyone had gone off entocort totally and then when they had a flare.. it no longer worked.. he said he did not know of any cases. He said that although CC can be controlled either with diet or medication it can't really be "cured". He said there was no reason for me to go off entocort. I could taper down to one dose a day and only take more if I had a flare. As I said above.. it took several years to get to two pills a day.. and then to get to one.. I didn't just abruptly go to two a day. I took two one day and one the next.. it took trial and error but I finally made it.
grannyh

hoosier1 · Post by **hoosier1** » Mon Nov 08, 2010 5:23 pm

Granny and Gloria,

I am planning to stay a 9mg a day indefinitely. Getting my blood checked right now, and probably regularly, is a good idea I think.

Rich

grannyh · Post by **grannyh** » Mon Nov 08, 2010 5:49 pm

Rich, make sure if you are taking any other medications that they are also considered with the amount of entocort you may be taking. If I have to take tylenol with codeine... now that I am down to one pill a day.. I might be able to skip a day or so of entocort. If you are ever prescribed prednisone for any reason.. you probably won't need all of the 9 mg a day of entocort and may not need the entocort at all.

Finding your maintenance dose is trial and error..even the doctor told me that...
Hope you have as much success with entocort as I have had..
grannyh

hoosier1 · Post by **hoosier1** » Tue Nov 09, 2010 6:02 am

OK Granny,

Can I ask why you are taking Tylenol with Codeine too?

I have some pretty nagging lower left quadrant pain that I try to manage with Tylenol.

Rich

grannyh · Post by **grannyh** » Tue Nov 09, 2010 8:31 am

I don't take tylenol with codeine on a regular basis.. although I read years ago on the other forum before this one.. that someone was totally controlling CC with it. Seemed dangerous to me.. since it knocks me out... would never be able to drive again..LOL

I have had some major dental work done over the last three years.. I can't take aspirin for pain.. so ... we (doctor/dentist and I) if you can't take an anti inflammatory... you might as well get rid of what pain you can and knock yourself out...:) Also broke my ankle awhile back.. A couple of days of tylenol with codeine.. gets the relief from pain.. some good sleep.. and the side benefit has been that I didn't need the entocort. Ok ... it is a nutty relief for pain.. and it isn't used often... but it works for me and none of my doctors has a problem with it. I know I have never used a prescription for 30 pills in an entire year.. so I don't think there is a chance of addiction. I throw them away at the end of the year...
grannyh