New Member Introduction (Wren):

[Sheila]

Welcome Wren. I logged on today to report on my wonderful GI doc. I also live in Florida, Palm Beach County and, if you are nearby, would recommend Dr. Bernie Stein in Jupiter/Palm Beach Gardens area. I saw him yesterday and he agreed to keep me on 1 entocort a day, try to wean to 1 every other day. He knows I have celiac, although I had to prove that myself with the gene test from Entero Lab. I tested negative when given the celiac blood test. He is open to the dietary connection between MC and D and actually listens when I speak to him. I think he checked out this website although he didn't actually admit to it. He knows that I'm going through a very stressful time and doesn't want to add to that by changing anything since I'm doing well with the entocort/GF/DF/SF regimen.
As an aside, my mother also had PMR for many years and was on prednisone off and on all that time. Her bones were starting to weaken but she did live without anything broken to the age of 92. She also had MC but didn't do the GF diet and stopped taking entocort simply because she didn't like to take medication. When she tried to get back onto it, it didn't work as well. My doc is also aware of that and it's one reason he agrees to keep me on it as long as necessary.
You are in wonderful company here. This group made it so much easier to figure out how to live with this disease. I'm taking entocort because for the month I tried to manage things with diet, the D was relentless and I was sick and tired of being sick and tired.
Sheila

[Wren]

Hi Sheila,

I tested negative for celiac, too, but I know from reading this forum that means very little. I tried the Pepto route but it made my tinnitus unbearable. Also tried Questran and I felt like I had glass all through my system.

Strangely, my insurance company would not approve Asacol but did approve the Pentasa. I have no idea why my gastro guy did not suggest Entocort but, in a way, I am glad to have something left out there 'in reserve', so to speak, just in case. (crosses fingers and knocks on wood!)

[Gloria]

When she tried to get back onto it, it didn't work as well.

I can certainly vouch for that. I used to get improvement in 2-4 days after going back or increasing my Entocort dosage. I'm on week 11 now and have seen little improvement, even though my diet is a small fraction of what it was in the earlier days of my MC.

Gloria

[tex]

Yes, that phenomenon is definitely real. I believe that Peggy is the poster child for that contingency. If I recall correctly, she experienced it first with Asacol, switched to Entocort, and then had the same thing happen with Entocort, when she weaned off and then tried to use it again.

Tex