Tapering off Entocort...Question??

Kimberly M · Post by **Kimberly M** » Wed Oct 05, 2011 8:03 am

Hi Friends!

I have a question for those of you who have successfully tapered completely off Entocort. It seems that clearing up a nasty candida infection in my gut has helped to heal my MC. I am down to 1 Entocort (3mg) every other day and doing very well. Should I go to 1 every third day now?? At what point can I just stop taking it? I don't want to do it too quickly but am excited about my progress and just want to be done with the drugs!!

Thanks for any input!
Kim

Gloria · Post by **Gloria** » Wed Oct 05, 2011 9:23 pm

It's important to understand that the effects of Entocort linger for at least 8 weeks, even at a very small dosage. This past year I tapered off Entocort and noticed a significant change in my symptoms after 12 weeks of being off of it, meaning that it still had some residual effect up to 12 weeks after I'd stopped taking it. That was quite surprising since we'd always assumed that once people got past the 56 day mark, they were home free. By the time I'd reached 20 weeks of being off of it, my symptoms were full-blown and I had to go back on it.

I think it's best if you taper slowly. You didn't indicate how long you've been on one pill every other day. I would stay on that dosage for about a month. If all has gone well after a month, then taper to one pill every three days. If you're still doing well after another few weeks, then you can stop altogether.

I'm

that you'll be successful!

Gloria

mar516 · Post by **mar516** » Thu Oct 06, 2011 12:11 pm

I'm a newbie. Am taking entecort 3 3mg 1x a day for 6 weeks, then 2x a day for 2 weeks & back to gastro. Should I expect more entecort?

Post by **tex** » Thu Oct 06, 2011 6:52 pm

Mary,

Yes, you should, because when your treatment regimen ends, your symptoms will relapse, but since your doctor doesn't understand how to treat MC, he or she will probably suggest trying some other drug, next. IOW, he or she probably mistakenly thinks that the disease can be cured by a couple of months worth of drug treatment, and he or she just needs to find the right one. There is no cure for MC, so your doctor's plan won't work.

Tex

Sharaine · Post by **Sharaine** » Thu Oct 06, 2011 7:56 pm

Mary,

I quit my Entocort 10 days ago. My doctor had said after 3 months I should quit cold turkey. I didn't plan to, but then I got very sick and couldn't eat or take meds for 2 days. So, I thought, why not just do what the doctor said. I should pause to say I'm also on Verapamil and one of the side effects of that is constipation. So, giving up Entocort has been easier than if I wasn't on Verapamil.

With that said, unfortunately, my D has returned. I've made up a huge pot of chicken soup (thanks for the inspiration, Sara) and am eating very few foods right now. I'm going to try Imodium to see if it helps because I was losing a lot of my hair on Entocort and I don't like that. If, however, I cannot get my symptoms minimized, I will relent and go back on Entocort.

Remember, each of us react differently. Just realize that Entocort (and other drugs) do not cure MC/CC. They help control the symptoms, but eliminating foods that we are sensitive to is also important to finding remission or close-to-remission.

Sharaine

Kimberly M · Post by **Kimberly M** » Sun Oct 09, 2011 6:05 am

Hi Gloria! Wow...... Entocort remains in your system for 12 weeks??! UUGGHH!!! I am soo sorry your symptoms returned...what a disappointment having to go back on the Entocort after 20 weeks. I was on 1 pill every other day for 1 month. I just started 1 pill every 3rd day and will do that for a while....especially after hearing your story. How are you doing now? What dose of Entocort are you on now? Thanks soo much for your input:)

Hi Mary! My old gastro doc told me the same thing.....a 3 month plan and I'd be fine.....he said food had nothing to do with the disease either:( Finding this group and a new holistic doctor has really helped and I think I am on the road to recovery. Best wishes in your journey with this nasty disease!

Hi Sharaine! Wow.....your doctor told you to quit the Entocort cold turkey?? That doesn't sound right.....I have been told to gradually cut back and give your body time to adjust. I'm sure some others on the board could explain the medical reasons why this is necessary better than I. Hope you're feeling better...that chicken soup is the best thing for you right now!

Kim

Gloria · Post by **Gloria** » Sun Oct 09, 2011 7:16 am

Hi Kim,

Since you've been a member of this board for a year, you've probably already read my "Weaning off Entocort" thread here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6730 If you haven't, it's 22 pages long, so set aside some time if you care to read it.

I am an unusual case and no one should be discouraged by my lack of progress. I believe that I have a fructose intolerance and a mast cell problem, in addition to MC. The combination of the three conditions has made remission with diet pretty elusive.

I am presently taking 9 mg. of Entocort a day, or 3 pills, and have been for a little over a month. I'm still eating my 9 foods (10, if you consider arrowroot a food

). I've tested a few foods that I used to tolerate at one time: ghee, chocolate, banana, tomato, etc., but I have reacted to them. At the moment it doesn't appear that Entocort will allow me to add new foods to my diet. I'm having between 2-4 BMs per day, mostly non-urgent, so it has helped in that respect. I'm not seeing perfect Normans yet. Prior experience has taught me that once my symptoms plateau on Entocort, I won't see further improvement unless I eliminate additional foods. I don't feel I can safely do that anymore with just nine foods on my list.

Before I went off Entocort, I was doing very well on one pill every three days. I thought for sure that this last time would have been different, but it wasn't. I think I'll have to get the mast cell/histamine problem under control before I'll be able to see progress.

I hope you continue to do well with one Entocort every three days. Your timetable seems to be a reasonable one.

Gloria

Kimberly M · Post by **Kimberly M** » Mon Oct 10, 2011 8:08 am

Gloria-

I will definitely take the time to read your thread! Thanks for bringing that to my attention. I am so sorry for all you have been thru and your list of food sensitivities.......that must be soo difficult! You seem to have a great outlook though and will figure it all out! This disease sure forces us to be persistent doesn't it?! Thanks for your information and encouragement!

Kimberly

mzh · Post by **mzh** » Thu Oct 13, 2011 9:01 am

Gloria, I've been thinking about you. Glad you're still plugging along although I wish you were having an easier time of it. I too went back to 9 mg Entocort although I believe diverticulosis and a coffee problem is partly to blame for my lack of responsiveness .

Is there info on your mast cell problem in your 22 page thread? I don't know a thing about that but maybe it's time to learn about it.

rudi · Post by **rudi** » Sat Jan 12, 2019 2:15 pm

Trying to wean off endocort, but symptoms return after a couple of weeks, not the d but going aboug 5x a day, should i go back on two, currently one 1 pill, for a week, or try to stop

brandy · Post by **brandy** » Sat Jan 12, 2019 6:02 pm

Welcome to the forum!

Are you gluten free and dairy free? How long have you been gluten free and dairy free?

Studies show a pretty high rate of relapse (like 70-80% without being GF and DF). Our members have
pretty good results getting off of Entoroct being GF and DF and being on Entocort 4.5-5-6-months or so.

How long total have you been on Entocort? How many months?

If you are struggling go back to 2 pills for awhile until things settle down. Go GF and DF if you are not already.
When things stabilize (this may be a couple of months) Retry a stepdown. Consider 2 pills then 1 then 2 for a month
or so. Then step down to 1 pill every day for a month or so. Then 1 pill every other day for awhile. Then 1 pill every
third day for a month or so. Then stop. (All the while being GF and DF.)

Post by **tex** » Sat Jan 12, 2019 6:38 pm

Hi Rudi,

Could your diet be cross-contaminated? It's kind of unusual to have that many bowel movements (BMs) without diarrhea. Did you have lower frequency when you were taking two capsules per day? If you did, you might need to go back to a higher dose, especially if you can't track down any problems with your diet. At least that's what I'd do if I were in your situation.

Tex

rudi · Post by **rudi** » Fri Jan 18, 2019 2:50 pm

This is rudi,
No I do not have cross contamination as I live alone, no I am not df or gf, what can you eat? I have tested negative for celic and do not have the antibodies in bloid, how do you get tested for sensitivity? I hsve been on endocort 7 mos

Gabes-Apg · Post by **Gabes-Apg** » Fri Jan 18, 2019 3:34 pm

many people here tested negative for celiac but gluten is highly inflammatory (and damaging) to their digestion

here is some info why
https://perskyfarms.com/phpBB2/viewtopi ... d+negative

as to 'what can you eat'
well cooked animal proteins and 2-3 safe veges.
we have eating plan suggestions in our guidelines to recovery
https://perskyfarms.com/phpBB2/viewforum.php?f=79

as you have been on endocort for 7 months, you are not a good contender for the enterolab sensitivity testing
some here ( i am one of them) did elimination protocol to figure out sensitivities

hope this helps

Post by **tex** » Fri Jan 18, 2019 5:07 pm

rudi wrote:no I am not df or gf

That's why you can't wean off budesonide without relapsing. I agree with Gabes. The celiac blood tests are so insensitive that many authorities insist that they only detect about 5 % of celiac cases. And doctors have no test available for detecting non-celiac gluten sensitivity.

Tex