Entocort Issues

lorimoose · Post by **lorimoose** » Tue Sep 17, 2013 5:40 am

Good Morning,

I have been on Entocort for six weeks. I reacted strongly from the beginning. I ended up 2 weeks on 9mg, and had severe constipation. Dropped to 6mgs, and after one week again clogged up, and have been on 3 Mg for the last 3 weeks. Brain fog, nighttime legs cramps and constipation are still a big problem. Yesterday, I decided to skip a day and woke up today with a headache. I feel like it is much too soon to go to every other day, but it also feels like time for some change.

My diarrhea and stomach pain are gone (except for pain one day, when I tried to have tomato sauce, which I thought might be a trigger food...pain the next day). My diet is strictly gluten, dairy, soy and egg free. I eat cooked veggies, and added some fresh fruit in hopes of helping with the constipation, so I could stay on entocort. I have even tried to put some caffinated coffee, mixed into my one cup of decaf to help, but it is still a challenge.

It feels like it is much to soon to wean off the entocort. I can't ask my doctor for advice, since....well you know.

What do you suggest? All advice is appreciated.

Warmly,
Lori

Post by **tex** » Tue Sep 17, 2013 8:02 am

Hi Lori,

Some people are more sensitive to budesonide than others, mostly because the medication is more effective for them than it is for most people. You appear to be one of those individuals. That suggests that you need a lower dose. Since the only way to accomplish that is to skip days, if I were in that situation I would probably try taking it on alternate days, and if that didn't resolve the D, I would try skipping 2 days, then 3 days, etc.

Taking more budesonide than necessary not only causes unnecessary C problems, but it can delay actual healing for no good reason.

The bottom line is that anytime you have C, you need to reduce your dose of Entocort.

At least that's what I would do if I found myself in that situation.

Tex

Leah · Post by **Leah** » Tue Sep 17, 2013 2:51 pm

I agree with Tex. Keep experimenting until you get the right dose... even if it is every three days.

Leah

lorimoose · Post by **lorimoose** » Thu Sep 19, 2013 12:41 pm

Thanks Tex and Leah,

I am lucky the entocort worked so well, and I have started skipping days. I am getting used to all this cooking! I think my Chinese restaurant, must be worried that I am missing in action. :ChefStirringPot:

Warmly,
Lori

Joefnh · Post by **Joefnh** » Thu Sep 19, 2013 4:10 pm

Lori I'm glad the Entocort worked so well, for many it takes much longer on a higher dose to see a resolution of the D

It sounds like your doing the right thing in adjusting your dose to find what works best for you. Be careful of Chinese food...dependong on the restaurant it can be a real set of land mines for those with MC

lorimoose · Post by **lorimoose** » Thu Sep 19, 2013 4:29 pm

Hi Joe,

I gave up Chinese food completely, although it was my favorite.....several times a week! I make a stir fry with coconut aminos, which is ok and I am glad most veggies agree with me. My entocort dose was strong for me from the beginning..I felt weird right away. I hope I don't relapse.

I see you've got a big wedding coming up!! Many happy wishes.

Warmly,
Lori

Joefnh · Post by **Joefnh** » Thu Sep 19, 2013 4:34 pm

Thanks Lori, your stir fry sounds great. I miss Chinese food as well, I have not tried cooking it myself as of yet. I've played around with some simple stir frys, more Polynesian in style, they were good. I think it was Polly that told me about the coconut aminos, that really does add a nice flavor.

Yep wedding time is getting near....I can't wait!!

Take care Lori, I hope you are able to sort out the dosages soon.

DebE13 · Post by **DebE13** » Sat Sep 21, 2013 3:13 pm

Good luck Lori, the lesser dose is a good thing! I was never able to achieve C even at the 9mg dose. I'm currently taking 3mg every third day. I'd like to be off all together since I've been taking it since February 2012 but am not able to. Don't rush it but enjoy the need for less!

lorimoose · Post by **lorimoose** » Sat Sep 21, 2013 7:02 pm

Thanks Deb,

Today I had normals, but a lot of pain this afternoon....I have no idea why. A plain old boring day would be nice...FOR ALL OF US.

Warmly,
Lori

DebE13 · Post by **DebE13** » Sat Sep 21, 2013 9:40 pm

Haha, i like boring. One day at a time- a visit from Norman is good any day. Hang in there.

janet · Post by **janet** » Sat Sep 21, 2013 9:57 pm

Hi all. I am into my fourth week of taking three entercort ea morning. The diarea is not so urgent, and I am going less ea day. Next week I have an appointment to see the gastro Dr whom I have seen pnce before, he was the one who put me on Entocort. Well friends I would like some help in making a small list of questions I would like to ask him. I would like to know how long will it take to cure me? Or is MC a disease that Dr's cant cure. I forget everything when I am with a Dr such as he, but, I must say I like the man he is straightforward. Its so very diminishing to my dignity, I wish it would just disappear. Once I was told I had it because I was welsh, and celtic. How can that be? I always seem to think we have too much chemicals in our food these days..
Just to make you laugh I have been making pickles here, to set aside for Christmas, And I cant ea them nor can my husband, we would have terrible hearturn.. Dont we do funny things.

Bye for now..Marie (Janet)

DebE13 · Post by **DebE13** » Sun Sep 22, 2013 8:15 am

I'm the same way with doctors, I usually get in such a hurry to leave I forget all my questions. Not a wise thing when I'm paying so much money to see them. Sometimes I bring my mom with for another set of ears but so very few people understand MC that even she doesn't know what to ask, but it's nice to have a second interpretation of the visit. I also write all my questions down so I don't forget. Unfortunately, in my case, the handful of GIs I've seen over the years have not been helpful since they still believe MC is a disease of inconvenience and once you find a pill/drug that works (asacol, cholestyramine, entocort, prednisone, etc) you'll be up and running in no time. It was suggested to me to just keep a soft diet in hard times- you know, rice, saltines, cream of wheat.

The politest comment I received when rebutting the food issues was that it didn't hurt to try. Mostly it was a brush off since I've tested negative three times for celiac so of course that couldn't be it. (A bit of sarcasm if you're not familiar with the chip on my shoulder, haha). I find my GI is good for my colonoscopies which I have to do every three years since I've had precancerous polyps the past two times and for writing my script for entocort. That's about it. I do need to give my GI credit though, he did authorize the lab order for the basic Enterolab tests which saved me a lot of money. I doubt if he would do it again though, since he has not said one word about the results to this day.

I've found the wealth of information and experiences here my lifesaver. Tex's book is also well worth it to use as a reference. Too bad more doctors wouldn't take the time to explore it.

Post by **tex** » Sun Sep 22, 2013 10:10 am

Hi Marie,

Unfortunately, similar to the other inflammatory bowel diseases, there is no known cure for MC. Even after we are in remission, we have to follow a treatment program of some type at all times, in order to prevent a relapse of symptoms. Most of us choose to make diet changes as the basis of our treatment program, and by carefully avoiding the foods that cause us to react, we are able to either totally avoid the need for medications to treat the disease, or we are able to minimize the use of those medications, so that we don't have to worry about the long term consequences of side effects from the use of those medications.

Deb is quite correct — when asking questions about microsccopic colitis, you will get many more correct answers to your questions here, than you will receive in most doctors offices, because unfortunately, most doctors really don't understand the disease very well at all.

Tex

janet · Post by **janet** » Sun Sep 22, 2013 7:24 pm

THANKYOU SO MUCH FOR YOUR EXECELLENT ADVICE. YOU A QUITE RIGHT TEX REGARDING WHAT YOU EAT, I ONLY WENT AND ATE 4 TINY BOXES OF SMARTIES YESTERDAY, AND HOW SORRY I WAS, AND DISAPPOINTED, WONT EVER DO THAT AGAIN. ALSO I HAVE NOTICED THIS IF I EAT A NORMAL HELPING OF FOOD, I KEEP IT IN ME FOR 5 MINS. I WILL WRITE ALL THESE THINGS DOWN, AND HOPE THE GASTRO DR HAS TIME TO LISTEN TO ME.

TALK TO YOU SOON, HANG ON TO YOUR BUM TILL THEN.

MARIE