Tapering off Entocort

[suzieq]

Hi all,

I am tapering off Entocort and I don't where to go from here. I've been taking Entocort since mid September. I was taking 6 mgs of Entocort for 2 days and 3 mg for 1 day. I got so backed up and was in a lot of pain. Now I am taking 6 mgs for 1 day and the next 2 days 3 mgs. I just started doing that. I had a normal Norman today. Where do I go from here?

I have to explain that my new Primary care gave me the prescription for Entocort to start me off and I was supposed to follow up with a GI Dr, only the GI Dr I was referred to isn't on my plan and my deductible is too high to go out of network. I told his office but never got another referral. I go back to the Primary care tomorrow for a physical and I am going to ask for a refill of the Entocort so I have enough. The Primary care doesn't know much about CC.

I know I read a post with Entocort tapering recently but can't seem to find it. Can anyone lead me in the right direction?

Thanks for your help.

Susanne

[tex]

Just continue to reduce the dosage every few weeks or whenever C becomes a problem. Usually, after getting down to 3 mg ever third or fourth day for a while, most people stop completely, but others add another step or two to the tapering plan, and some continue to take a low dose indefinitely (if they are unable to maintain remission without it).

Tex

[jlbattin]

I've been taking Budesonide since around the 1st of July and am on my tapering cycle..............I did 3 mg. for about 2-3 weeks and am now on 1 every other day for about another week or so and then I'll go to 1 every 3rd day......is working great for me.

[suzieq]

Hi,

This is my 3rd time taking Entocort since 2011 and I'm mad at myself for not remembering.

Thank you for the information. I know I have to tapering slowly. I just had another episode of severe abdominal pain from constipation, I was doubled over in pain. I did have a norman this morning but like I said I was backed up. I took 6 mgs this am and was planning on 3 mg tomorrow and Friday. Will see what happens.

Thanks again,
Susanne

[brandy]

Hi Susanne,

If you are getting backed up you might be ok with 3 mg every day. It sounds painful. Brandy

[suzieq]

Hi,

Thanks, I'm doing ok. I am taking 6mgs, 3mg, 3mg, 3mg. then repeat until I get backed up again.

My new primary care refilled the Entocort for me with and extra refill "to play around with" if need be. I guess he knows a little more about it then he let on. I do have a appointment with a GI dr., can't get in until the end of January.

Thanks again.

Susanne

[suzieq]

Hi all,

After spending the last few days uncomfortable, with small normans, today I'm double over in pain and have had many normans. I'm staying close to the toilet today. I guess I should be happy that it's normans keeping me close to the toilet and not WD.

The last time I took 6 mg was this past Sunday. I'm going to reduce the Entocort to 3mg a day for one more week and see how it goes. Then if all goes well start reducing even further.

On another note, I have gone into every pharmacy around and ask if they have the eggless flu vaccine. They don't, so I guess I'm not getting it again this year. Drs. office doesn't have it either.

Thanks,
Susanne

[suzieq]

Hi all,

I tapered down to 3 mg of Entocort a day, last time I took 6 mgs was 11-15. I was in so much pain yesterday and had normal normans. Last night the pain woke me up again, abdominal, indigestion, etc., I was awake most of the night curled up in a ball which really didn't help. I passed a little gas and a little mucous, it didn't help. This morning I had another normal norman. I still have a lot of discomfort.

This disease is debilitating and so are the side effects of Entocort. My husband still doesn't understand. This is my 3rd flare since 2011 and he just doesn't get it, the diet or anything. My siblings don't get it either. My son is a sous chef and he doesn't get it at all, I want to smack him and tell him to wake up, there are people out their with this disease. Anyway, I just want to hide until this flare and meds are over.

Should I start taking the Entocort every other day?

Thanks for any help and advice.

Susanne

[tex]

Hi Susanne,

Yes, I believe if I were in that situation I would try taking them every other day to see how that works.

Tex

[suzieq]

Hi Tex,

Thanks for the advice. I am not taking the Entocort this morning. I had a lot of pain yesterday and normal BM but not a lot. I did sleep comfortably through the night but had tremendous amount of pain this morning. I had again a normal BM but not a lot. I did pass a bit of gas too. My lower abdomen is tender to the touch. I did not take the Entocort today. I want to be off Entocort already.

Tomorrow am we leave for New Jersey for a Thanksgiving vacation to visit friends and relatives. Eating will be a challenge. I am going to pack my Imodium, I don't travel without it. I don't like to take it.

I have to correct myself with yesterday's post. My son, the sous chef, sort of understands my problem. I gave him the task of finding a place to eat near his apartment in NYC for our visit. He picked a place, he knows the chef, and he went over the menu with me and will speak to the chef before we go.

I want to wish all the Potty People and very happy Thanksgiving.

Thanks again,
Susanne

[tex]

Susanne,

Good luck, and I hope the trip is very enjoyable. You're wise to take those precautions, because it sounds as though your digestive system is still a bit "angry". Maybe it's just anxious about the trip.

Tex

[Goesalot]

Saw your post about the eggless flu shot. There is such a thing. My daughter needs it but it has to be a special order and your doctor has to order it. My daughter works in a hospital so they are ordering it for her because if she doesn't get the shot she has to mask at work. That's a pain. The supply she was told is very limited. Ask your doctor if you really feel the need to have the shot. Since my colitis started I throw up from eggs but the flu shot didn't bother me. Fun how that works.
Ruth

[suzieq]

Thanks, Ruth. I did mention it to my Dr. and they did not offer to get it for me nor did they suggest that I try the regular. I never found it in NJ either, and it was the same, they didn't offer to get it but I do remember them telling me that I shouldn't get the regular flu shot. Keeping my fingers crossed!!!

Tex,

I really think that I didn't taper soon enough and that the Entocort has totally backed me up. I've been in the bathroom quite a bit today, still have some pain. I will take Entocort tomorrow and then every other day for a week, then taper off some more.

I am anxious about my trip to NJ, I don't like road trips. I have my valium packed already. I don't like to fly either but I would rather be anxious about 1 1/2 hr plane ride as opposed to a 12 hour car ride. We are doing the trip to NJ in 1 day but the trip back to NC we are stopping overnight.

Thanks,
Susanne

[tex]

Susanne,

Yes, Entocort can certainly amplify constipation issues once they begin. And please remember that valium acts as a sedative on the bowels, also, so it can slow down motility.

Tex

[suzieq]

Thanks, Tex.

I'm sure the Flexiril I take for my fibromyalgia contributes to the constipation even more. I never even thought of it.

Susanne