My GI doc's take on entocort ec dosage and time frame

grannyh · Post by **grannyh** » Wed Dec 29, 2010 6:48 pm

As I mentioned in another post I went to my GI doc today. I asked him why there seemed to be so many doctors who give entocort on a very limited basis.

He said that in "general" Entocort is prescribed as 3 pills a day for three months and then have the patient taper off if possible..

He has had only ONE patient who did not respond at all to entocort ec but in addition to CC the patient had so many medical problems he really couldn't point to the entocort as being the problem in not receiving some relief.

I asked about the fact that I had been on it for years .. he said that it is the best medicine as far as least risk for microscopic colitis family. He said that whatever works for the patient is what works for that patient.. I did get down to one pill a day.. and had my life back.. and was eating whatever I wanted.. which was what I wanted:)
grannyh

Post by **tex** » Wed Dec 29, 2010 8:22 pm

Thanks for sharing your doctor's thoughts. That confirms what we have long suspected, namely that Entocort EC is probably the safest effective drug available, for treating MC.

Tex

grannyh · Post by **grannyh** » Wed Dec 29, 2010 8:25 pm

Too many doctors take the guidelines too literally.. on dosage.. and don't take into consideration how this illness is so specific to control for each patient... to limit the prescription and feel it should "cure" the patient in X months is nuts!
grannyh

Post by **tex** » Wed Dec 29, 2010 8:51 pm

I agree, but they're probably afraid to deviate from the label, because they know virtually nothing about the disease, and probably know precious little about Entocort EC, either, so they're sort of between a rock and a hard place, and afraid to stick their neck our very far.

Tex

grannyh · Post by **grannyh** » Wed Dec 29, 2010 8:53 pm

The GI doc said exactly the same thing..most doctors know very little about Entocort..and in fact most have never even heard of it! The prednisone treatment is in the OLD texts...
grannyh

harma · Post by **harma** » Thu Dec 30, 2010 5:13 am

Are you serious a GI doc who has never heard of entocort? Do they exist?

grannyh · Post by **grannyh** » Thu Dec 30, 2010 7:06 am

Yes, absolutely, there are GI docs who don't know about Entocort and most who do know about it for treating other diseases don't know to use it for MC.

My doc says I was just lucky I found treatment in a research, teaching, environment because of where I live. Actually, the trip to the medical center area is harrowing.. the traffic raises my blood pressure and I am just the passenger in the car...LOL I had no luck with getting a diagnosis or medical help out here in the "country".
grannyh

Celie · Post by **Celie** » Thu Dec 30, 2010 8:46 am

As some of you know already, my stepmother was diagnosed with LC this summer. Her GI doc told her there was no effective treatment and that she should just take Imodium and learn to live within the boundaries. She was losing a pound a day at the time. So, yes there are GI docs who don't know how to treat MC at all...

I took my wonderful stepmom to my gi doc and she is doing great on Entocort. The only good thing about my LC is that when my precious 87 year old stepmother got it, I knew what it was and knew how to get her good help. As this board shows, experience can help others.

Celie

grannyh · Post by **grannyh** » Thu Dec 30, 2010 9:19 am

As I told my GI doc.. there is probably more experience here than anywhere else in the world!

I wouldn't blame the family doc.. mine put me on lomotil because he felt that was safer than prednisone. When I almost died a couple of times he pulled his rank and got me into the medical center. Family doc saw me right before New Years Eve and got me into the doc in the medical center on the first business day after New Years for a scope. The GI doc the family doc had sent me to had said HE would arrange an appt in the medical center since as a patient I wouldn't be able to make an appt for months... family doc is also a hero in my eyes. He was the first to link the possibility of the colon prep triggering the colitis. Although the family doc knows very little about Entocort.. he will now prescribe it on a month to month for me basis since he knows I keep up with the GI doc. I don't need to have family doc prescribe it since the GI doc does a year at a time for me.
grannyh

Celie · Post by **Celie** » Thu Dec 30, 2010 9:25 am

Granny,
Her first doc was a GI doc... He did the colonoscopy. I don't think he would even have checked for it if I had not asked him to. He told her it was colitis and that she would just have to live with it...

She tried diet and got sicker and sicker. She was losing a pound a day. She would call the office and the nurse would just tell her the doc said to just keep taking the immoduim. She is 87 and does not have the weight to lose. Entocort has given her her life back. Like with you, my doc (now our doc) is happy to have her stay on Entocort forever. She does not have to worry about the long term consequences.

Celie

grannyh · Post by **grannyh** » Thu Dec 30, 2010 9:29 am

Hopefully, with us older folks staying on entocort long term there will be information about whether there are any long term side effects which might be helpful information to those who are younger.
grannyh

Celie · Post by **Celie** » Thu Dec 30, 2010 9:47 am

I hope that is the case. The good docs learn from (and with) their patients. Others just go through the motions. (Of course, that is true for all professions.)

Celie

GRB · Post by **GRB** » Thu Dec 30, 2010 10:33 am

Hi everyone. I'm glad this thread is here today because I've been trying to reduce my Entocort use per GI doc's instructions. I do fine on two a day but every time I try to reduce to 1 a day I start to get symptoms. Stomach ache, rumbles, gas and the feeling that I'm going to have loose bowels (I haven't but I feel like I do)...

I am currently trying the 2 a day, 1 a day, every other day to see if that will work.

My GI is afraid of long term damage from the Entocort because it is a steroid. I felt normal and great on 3 a day...feel less wonderful but tolerable on 2 a day.

I received my test results back and I'm casein sensitive as well as gluten...soy is fine.

grannyh · Post by **grannyh** » Thu Dec 30, 2010 10:45 am

GRB,
How many patients with MC does your doctor have? How much experience does he have with treating MC with entocort? Does your doc know there is NO cure for MC.. just the hope for remissions?

If you can control your symptoms with diet.. of course that is the safest way to go. I was on 3 pills a day for several years..then went to two for several.. then did trial and error to get to one pill.. it took YEARS...
grannyh

GRB · Post by **GRB** » Sat Jan 01, 2011 4:37 am

I want to ask that question the next chance I get...after this long holiday. How many patients with MC do they treat? I know that when I was diagnosed I was told it was rare, there was no cure, it's a disease of older women (mostly) and to avoid fiber, raw vegetables, wheat, milk and soy. Oh, and that it wouldn't kill me...HA!! Wrong!!

I posted in another thread that their desire to get me off of Entocort worries me and I'm probably going to end up in a fight over it because I don't want to risk another big D moment...why would I do that when I'm doing so well on Entocort? They worry about side effects but as I've read here they don't really know that much about Entocort...or this disease. What if I go off of Entocort and have to go back on and it doesn't work for me anymore? What about quality of life?

I thought they were doing pretty well but the more I learn here the more I question my original evaluation of their knowledge about MC.

I'm prepared for this to take years granny...I think they are pushing it.