tapering entocort after 6 months

thedell19 · Post by **thedell19** » Fri Jul 21, 2006 8:54 pm

Well I have been tapering entocort for about 1 month now. Normal dose is 3 3mg tabs per day. I did one week on 2 one day 3 the next, one week on 2 per day, and then about 13 days on one per day. I am on day 7 in the last phase descriped above.

So far I have been doing very well not noticing too many side effects or symptoms except for my acne acting up and my stomach rumbles every now and again. I have learned that I should not eat Hagen Daaz sorbet since it might contains trace amount of milk protien. I usually feel a bit iffy the next morning but I dont have any D or anything. Should I be concerned about the trace amounts in stuff?

thedell19 · Post by **thedell19** » Fri Jul 21, 2006 8:56 pm

And my Gi said today after my results for the barium swallow (negative) were in, he doesnt think I ever had UC or anything like that and it was an infection then or something. So I am to see him again when I am having problems.

Well I still think MC and the GFCF diet has helped!

Post by **tex** » Fri Jul 21, 2006 10:39 pm

Andrew,

Yes, you definitely need to avoid trace amounts of anything that you are intolerant of, especially while you are still healing, and weaning off the meds.

I think you're correct about the MC, and the diet.

Tex

harvest_table · Post by **harvest_table** » Mon Jul 24, 2006 9:59 pm

Hi Andrew,

Wishing you best of luck weaning off the Entocort - You have a good plan. It's great you don't have MC or UC- I'm pleasantly surprised to hear this news! Keep us posted.

Love,
Joanna

thedell19 · Post by **thedell19** » Tue Jul 25, 2006 10:35 am

I been on 1 perday for almost 10 days now I think.

I think I have tapered properly, but if not will I go thru withdrawal symptoms? If so what are they? I tried to looked online and one site said muscle fatigue, fatigue, and something else.

hazel · Post by **hazel** » Tue Jul 25, 2006 11:28 am

Thedell,

When I tapered off and stopped Entocort all the side effects were GOOD! The muscle cramps ceased and I lost the weight I'd gained. And the diarrhea did not return! I was on it for about a year though, before I tapered off.

Good luck!

thedell19 · Post by **thedell19** » Tue Jul 25, 2006 12:07 pm

I am looking forward to the leg muscle cramps ending but I have gained 15 pounds while on Entocort and love everypound of it.

I have been on it about 6 months and on the gfcf diet for about 2 months.

harvest_table · Post by **harvest_table** » Tue Jul 25, 2006 12:33 pm

I took Entocort for 6 months and had no withdrawel problems weaning off it. Also, started a GF diet at the time.

The problems you will have to deal with now will be that you no longer have the med masking your symptoms and your body will be more sensitive to your trigger foods. Like I said, you must stop french kissing your wife when she's drinking a beer! HAHAHA

Crossing our fingers for you Andrew!

Love,
Joanna

thedell19 · Post by **thedell19** » Tue Jul 25, 2006 12:37 pm

Well hopefully I dont have anymore trigger foods. I have cut gluten and casien out of my diet completely for about 2 months with one or two mistakes. Dr Fine's tested showed negative results for soy, yeast, and eggs.

I plan on getting his test for rice and corn when it comes out.

JJ · Post by JJ » Tue Jul 25, 2006 8:29 pm

Hi...I was down to two pills per week! Then...the D came back...I am taking one pill every other day now, and things are still not back to normal, but are better. I am still taking antibiotics, so this is a miracle. BTW...my cat bites are almost healed.

JJ

thedell19 · Post by **thedell19** » Wed Jul 26, 2006 9:37 am

JJ-

How long have you been on Entocort?

Are you trying a diet as well or just trying the med route?

JJ · Post by JJ » Wed Jul 26, 2006 10:33 am

Hi...Ummmm...no diet at this point....I can't remember when I started Entocort, maybe 2 yrs ago? ....but I was allergic to Asacol and another drug didn't work...tried Pepto plan too. I have had good luck with Entocort and hope I can even taper off more when things settle down. I had such an emotional spring...too much stress about job cut back...that my colitis really flared-up again. I haven't had any visible side effects from the drug, and I had a bone density test which was normal. I take 2 Caltrate pills per day and hope that will help in the long run. TTFN...JJ

Lucy · Post by **Lucy** » Thu Jul 27, 2006 4:31 am

Hi Andrew,

Did you hear something about tests for rice and corn coming out of the lab soon? I still have my little boxes for mine and Mom's soy test specimens as well as our first retake for the other antibodies and fecal fat that we got free for attending the conference this past spring. I really should've retested quicker, but I've been so strict and assymptomatic that I figure I couldn't improve things if I had to at this point.

The boxes are sitting here starring at me. Have just been too busy to have time to collect them lately what with adjusting Mom's meds, etc.

Problem I'm having now is that I have to eat wheat free soy sauce to produce the antibodies for the test. Anyone have any idea how long they stay in the body? I know that all but the gluten don't seem to linger long. I just hate to ingest the stuff, and then get delayed in collecting the specimen. I'm afraid if I keep doing this, I'll damage my bowel again.

I'm also trying to clear out enough room in the freezer to have a place to freeze the specimens which is taking longer than I thought.

Excuses, excuses, right!

I suppose that if the rice and corn tests come out right after I get the other results, how soon I get those tested will depend on how soon the other results indicate I need to repeat those again.

I like to batch things together into one specimen whenever I can. I feel like I can wait a little longer on the corn and rice now since I've never had a problem with either of them like I did the others that I now don't eat. If I noticed a problem with either, I'd turn around and send in another specimen ASAP whenever it shows up for sale.

There's a possibility that I may have to double check the fecal fat again soon, if I still have a little malabsorption of fat going on. I sure don't see anything though -- stools look perfectly normal and have for a long, long time now.

It just might be that at my age, I'm never going to be in the "normal" range again, no matter what.
I hope that when I finally get this specimen in, that I'll get a wonderful NORMAL report to match the way I feel and poop!

Anyway, all that to say, I'm interested in knowing if those two tests are supposed to be available to the public soon? Did you find out something from the lab about those coming out soon?

Thanks.
Yours, Luce