time to go off Entocort????

[Leah]

Okay, so I am taking one 3 mg. Budsonide every three or four days. I only go to the bathroom once a day, but the BM is definitely not formed. I still sometimes get bloating and gassy, but most of the time ( if I don't push it with the eating) I am ok. I'm starting to feel like when I take the pill, it makes things worse on that day.... like little pains. So, is it time to try to go completely off even though I don't have "normans"?

Leah

[grannyh]

Took me years to get off entocort.. it was easy to tell if I still needed it... D came back:)
grannyh

[Mim18]

I'm still on one Entocort a day for another 7-10 days. It is no longer working, no matter what I do with my diet. Some have said that I must still be ingesting "something" that I have an intolerance to. Five months ago the meds seemed to work fine. Now I just seem to be getting worse by the day.
Work has been stressful lately. Short staffed for way too long. I am at my breaking point. Add to that the fact that my 1999 Caravan with 179,000 miles on it is giving me problems. The car issue is new, so I can't blame that on the Entocort failure. Just discouraged and I am venting.

[grannyh]

Mimi,
I often had to go back to 3 pills a day and work back down to one again. Not familiar with how you have taken entocort or if you have tried going back to 3 again.
grannyh

[CathyMe.]

Okay, so I am taking one 3 mg. Budsonide every three or four days. I only go to the bathroom once a day, but the BM is definitely not formed. I still sometimes get bloating and gassy, but most of the time ( if I don't push it with the eating) I am ok. I'm starting to feel like when I take the pill, it makes things worse on that day.... like little pains. So, is it time to try to go completely off even though I don't have "normans"?

Leah

Leah-I can't remember how long you've been tapering off the drug or what your symptoms were before starting it? I think I can recall someone (maybe Tex) had stated that the drug stays in our systems for up to 9 days. IMHO, I would stretch it out more before completely stopping it but it's compltely up to you with what you can tolerate as far as the D. Sounds as though you're doing pretty well! Due to my stress levels, I had to jump start myself (go back to 2 aday) but am now back down to taking 1 pill every 3-5 days. My BM aren't completely formed either but 1 a day in the am is much better than the 15-16 that I was experiencing!

[CathyMe.]

Mimi,
I often had to go back to 3 pills a day and work back down to one again. Not familiar with how you have taken entocort or if you have tried going back to 3 again.
grannyh

Mimi,
I too had to "jump start" myself and went back to 2 a day for a few days before tapering back down.

[coryhub]

Hi Leah,
I jumped off the Entocort after 2 months of being on them. So far I have gone a month feeling great. You did not say how long you have been on your medicine. I never have "normans", if it comes out like soft ice cream it's a good day.

[brandy]

Hi Leah,

I think you'll be fine to go for it. You seem to grasp the diet and have been on Entocort for a long time.

I was having 4 or 5 approx 4" movements per day when I got off Entocort. It was nowhere near normans. I also had significant gas at that time also. It was only 4 months after getting off of Entocort that I started having normans. I also had significant gas during the 4 months after getting off of Entocort. I also was still having gurgling pretty much after every meal and up to about 4 months after getting off of Entocort.

I'm now 6 months off of Entocort and it has only been during the last 8 weeks that I rarely have gurgling. Also in the last 2 months the gas has gone away and I now have less gas than before MC.

As a reference I was on Ento for 4.5 months and stopped taking it when I could no longer deal with the side effects. It was my day to take a pill and I could no longer do it.

You should be fine, Regards, Brandy

[DebE13]

I've been on entocort since February and still can't go less than 3 mg a day without having watery D. I've been GF/DF since November and SF/EF since February. It's getting frustrating and I feel stuck but it could be worse too so I plan to keep plugging along.

[mickjcat]

Ladies,

I totally feel everyone's situations. I to have been dosing down from 2 Entocort over the course of the last month. When I started 1 pill a day is when the D came back with a vengeance. Fortunately, it is in the morning. 4-5 times to the bathroom and 6-7 Bristol stool chart. I had gotten to a 5 on the chart before dosing down.......I am back to 2-1-2-1 dosing.

I think we are in this thing for the long haul.
But I tell you I am so glad to have all the folks on this site to communicate with.

[Mim18]

This morning I stopped the Entocort. Why bother? It has not been helping, and after 5 months I have had enough. It did work for the first few weeks. No longer. I was supposed to take it for another week, but why bother? Today I have had applesauce and chicken. Will keep trying and do a day at a time. Will see what tomorrow brings.

[Christine.]

I have my fingers crossed and hope for a smooth transition. You sound a little discouraged. Hopefully it will the beginning of control with diet only.
Christine

[Gloria]

I won't go into my experience with tapering Entocort - it's in another lengthy post.

I would encourage anyone who is relapsing after going off Entocort to try taking Imodium, even if you tried it before being diagnosed. If it didn't help before, it might now that you have changed your diet. It doesn't cost much, it's readily available, and it doesn't require a long, slow taper to get off of it.

Just a suggestion, but it might help someone here.

Gloria

[DebE13]

Thanks Gloria,
Immodium was one if the first things I tried and it didn't help. Actually, it caused great discomfort and cramping which I generally never have. I never thought to give it another try.