Ok, I think it's time to step down to one Entocort a day! I'm a bit scared, but I'm starting to get a bit constipated, so I think it's time. If If I do well, I can start really testing some foods out. I'd really like to be able to eat some tomato sauce and maybe a little bit of salad ( but I know that's a tough one) Wish me luck!
Leah
stepping down to one pill
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Deanna in CO
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- Location: Colorado
Leah,
Good luck when you roll off your medicine. I am on entocort 3 a day but next week will go down to two a day. I can not eat spaghetti sauce even on my best day but can sometimes tolerate a little tomatoe sauce on a gluten-free pizza. As for salad, I will not even attempt that as I already know the results would be bad. I'm going to be so cautious this time round. I really want to be able to go a while without getting sick. I've had some good lengths of time before and I want to recapture that. Good luck to you Leah!
Good luck when you roll off your medicine. I am on entocort 3 a day but next week will go down to two a day. I can not eat spaghetti sauce even on my best day but can sometimes tolerate a little tomatoe sauce on a gluten-free pizza. As for salad, I will not even attempt that as I already know the results would be bad. I'm going to be so cautious this time round. I really want to be able to go a while without getting sick. I've had some good lengths of time before and I want to recapture that. Good luck to you Leah!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Thanks to all of you. I will do it gradually and I'll keep you updated.
Deanna, have you been on entocort before? If not, all I can say is that there is not too much to be scared of. I started it three months ago and I am already down from three pills to one because I feel so good :) It has been a lifesaver. Of course the diet has worked wonders, but I'm sure the drugs have sped things up. I had one flare during this time period ( I ate the WRONG FOOD) and had to step up the dose for a couple of weeks, but was able to step back down fairly easily. I'm not pushing it, but it has worked great for me.
Leah
Deanna, have you been on entocort before? If not, all I can say is that there is not too much to be scared of. I started it three months ago and I am already down from three pills to one because I feel so good :) It has been a lifesaver. Of course the diet has worked wonders, but I'm sure the drugs have sped things up. I had one flare during this time period ( I ate the WRONG FOOD) and had to step up the dose for a couple of weeks, but was able to step back down fairly easily. I'm not pushing it, but it has worked great for me.
Leah
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Deanna in CO
- Adélie Penguin
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- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Leah, no, I haven't been on Entocort. I actually have a bottle of it, but I've been holding off on taking it for various reasons.
1) I tend to react fairly strongly to medications, and I don't like the side effects many people seem to get.
2) I've been waiting for results from Enterolab, and didn't want my results to be affected by taking Entocort.
3) I have enough trouble determining what I'm reacting to even when I'm not on Entocort; I seem to be reacting to practically everything and I'm so frustrated. Having Entocort blunt my reactions so I have even less ability to determine what's causing them hasn't seemed the best course of action.
4) I strongly prefer to control my symptoms naturally, without drugs, if at all possible. I really want healing, not just control (though control would be nice!).
5) It's my understanding that Entocort becomes less effective the longer you use it and each time you go on and off it. I don't want to start on it, try to wean off, then have to go back on, if it's going to be less effective. That means I've got to be convinced it's really my only alternative.
However, the more frustrated I become, the more I begin to wonder whether taking the Entocort for a while might not be a wise option. My Enterolab testing is done, unless I end up deciding to do the more extensive testing. I've had all the additional testing Dr. Lewey recommended. I still don't really want to make it more difficult to determine what I'm reacting to, but if I don't start getting some control soon, I may go ahead with it anyway. Dr. Lewey actually recommended it.
Anyway, thanks for the counsel. I hope it works well for you; I'll let you know if I decide to try it myself.
Deanna
1) I tend to react fairly strongly to medications, and I don't like the side effects many people seem to get.
2) I've been waiting for results from Enterolab, and didn't want my results to be affected by taking Entocort.
3) I have enough trouble determining what I'm reacting to even when I'm not on Entocort; I seem to be reacting to practically everything and I'm so frustrated. Having Entocort blunt my reactions so I have even less ability to determine what's causing them hasn't seemed the best course of action.
4) I strongly prefer to control my symptoms naturally, without drugs, if at all possible. I really want healing, not just control (though control would be nice!).
5) It's my understanding that Entocort becomes less effective the longer you use it and each time you go on and off it. I don't want to start on it, try to wean off, then have to go back on, if it's going to be less effective. That means I've got to be convinced it's really my only alternative.
However, the more frustrated I become, the more I begin to wonder whether taking the Entocort for a while might not be a wise option. My Enterolab testing is done, unless I end up deciding to do the more extensive testing. I've had all the additional testing Dr. Lewey recommended. I still don't really want to make it more difficult to determine what I'm reacting to, but if I don't start getting some control soon, I may go ahead with it anyway. Dr. Lewey actually recommended it.
Anyway, thanks for the counsel. I hope it works well for you; I'll let you know if I decide to try it myself.
Deanna
Getting constipated is a pretty good sign that it's time to reduce the Entocort. Take it slow reducing from one to none. It seems like it would be the same step as the others, but it's not. I'm sure you will be going very slowly.
Good luck!
Gloria
Good luck!
Gloria
You never know what you can do until you have to do it.
Hi Deanna,Deanna in CO wrote:Oh, Leah, you have my best wishes! I hope all goes well and you are able to step down pretty easily. I'm debating going ahead and trying the Entocort as I am pretty discouraged at the moment.
Here's to healing!
t
Deanna
I wanted to chime in on the Entocort as I've had a similar response to it as Leah. It worked wonders for me and was a real lifesaver. The 1 big negative for me was acne on my forehead and that was when I first started it. I did have a flare up after I stopped taking it, I think it may have been related to coughdrops. I had to go back to the 3 pills a day and had another breakout but have been able to quickly taper down and I'm now taking 1 x3mg. pill every 3 days and I continue to have normans. I'm also being very diligent with my diet. Good luck to you!
I totally understand your reasons Deanna. I didn't want to take medication either ( I'm kind of a health nut being a fitness trainer), but I just couldn't continue to live my life weakened by D and having to be home most of the time. We all have our own limits. If you do decide to give the meds a try, let me say one thing. Immodium just gets rid of the D. Entocort brings the inflammation down... which in turn can speed up the healing process. After a couple months of healing, and lowering my dose, I can definitely tell when I am reacting to a food. The reaction is just less severe.
Leah
Leah
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mzh
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Take your time reducing. Tex once posted to reduce very slowly, like every 6 months. I believe it. I reduced from one a day to one EOD after 3 months and I had a breakthrough in only two weeks. I'm back on one a day for 6 days and still haven't recovered; I may have to amp it up to to 6 mg until I get constipated. I don't think I'll ever go to less than 3 mg a day again.
Also have sleep apnea
Agree with very slow, long, gentle taper off. I was on for 4.5 months and tried for 6 months due to Tex's recommendation . It "felt" like I could get off of Ento at 3 months. I'm very glad I stayed on the extra time. I was shooting for 6 months but had dizziness issues. Be very confident with your food choices before getting off. Also if you have any upcoming stressful events...job change, move, marriage, holidays etc suggest stay on longer. Also I didn't test any new foods during the 8 week period after getting off of Entocort. I stuck with the tried and true. It may be too soon for some folks but if you feel like you can handle it you might want to test eating peeled apples, short cut carrots, and lettuce (butter, baby spinach, or salad mix) before getting off of Ento. If you can manage it it will greatly add to your eating regimen. Again the raw stuff may be way too soon for some folks but I was eating the raw stuff b/f getting off of Ento. Good luck and best wishes, Brandy