Need a little guidance please

[Kimberly M]

Hi Everyone!

I have succesfully cut back to 6mg of Entorcort per day since mid Oct. (was on 9 mg per day for about 6 months) . My GI doc really wants me off the Entocort. Had my last appt. and he suggested adding a half of Immodium per day since my stools have been a little loose. That has seemed to help but I am in no rush to get off the Entocort too quickly. I have been on it since my diagnoses of MC in May of this year. I feel like I need to stay on the 6mg per day for a little longer just to give my gut time to heal. What do you all think?? My doc has me coming to see him every 6-8 weeks and I feel like he is getting impatient with my progress but I feel like I am doing pretty well and just need some more time on the med..............

One other quick question........Curious about not feeling horrible after Christmas day. I have been GF and ate a BUNCH of cookies. Dumb I know.............was waiting for the horrible reaction and had none?? Why do you suppose I didn't react at all??

Thanks ahead of time for all your input! A very Happy New Year to the wonderful group of people who are soo helpful!!

Kim

[Bifcus16]

Hi Kim,

Relying on Immodium would not be my first choice. A longer stay on Entocort would be better for you.

As to why you didn't react -have you been tested by Enterolab? It may be possible that you are not sensitive to gluten (or at least don't get a gut reaction), but that your D is in response to something else. Dairy and soy being the obvious targets.

Lyn

[tex]

Why do you suppose I didn't react at all??

Lyn may be correct about the gluten, if you haven't actually been tested. Or it may be because you're taking Entocort specifically for that purpose - namely to control your symptoms.

Actually, though, IMO, if you're still having stools that are a "little loose", are you sure that you have "successfully cut back to 6mg of Entocort per day"? "A little loose" doesn't exactly sound like a state of "rock solid" remission. If you're still having loose stools on 6mg of Entocort, a lower dose is probably going to bring on a full flare. There may be other foods that you are sensitive to, that need to be removed from your diet. Are you avoiding any food ingredients besides gluten. Or, as you say, you may just need more healing time.

Your doc sounds like a typical GI doc, who is inexperienced at treating MC, and who probably believes that Entocort is "just another steroid", so he wants you off if, ASAP. Imodium is not a very satisfying treatment for MC. Yes, it can postpone D, temporarily, but it does nothing to help control the inflammation that causes MC.

The bottom line is, I agree with you, that it is too soon to be lowering the dose Here's a good rule of thumb - when you are ready to reduce the dose, you will know it. Your GI doc, on the other hand, won't have a clue, because he is not the one living with MC, every day.

Anyway, that's my 2 cents worth.

Tex

[Gloria]

if you're still having stools that are a "little loose", are you sure that you have "successfully cut back to 6mg of Entocort per day"? "A little loose" doesn't exactly sound like a state of "rock solid" remission. If you're still having loose stools on 6mg of Entocort, a lower dose is probably going to bring on a full flare.

I agree completely. One shouldn't reduce to a lower dosage of Entocort unless the existing dosage produces Normans consistently. If you are getting loose stools, you are very likely intolerant to additional foods, or you haven't healed enough to reduce the dosage.

Gloria