possible to have flare while on entocort

lisa15601 · Post by **lisa15601** » Sun Dec 05, 2010 2:32 pm

As you have seen in my last few posts, I have not been doind so well. I'm just curious if any of you still had the pains, mucus, and flares after 2 weeks on entocort. My body aches almost seem worse now than before entocort and the insomnia is unbearable, I feel like I have every side effect listed. Sometimes I still wonder if I have c.diff even though it came back negative or candida. I know the colonoscopy came back with borderline LC, I'm so confused. I also read somerhing tex wrote a while back about intestiinal endometriosis and also wonder. I should stop going on the internet, I'm even getting more stressed.[/img]

lisa15601 · Post by **lisa15601** » Sun Dec 05, 2010 3:05 pm

Also how about intestinal burning feeling and heartburn.grrrr

Post by **tex** » Sun Dec 05, 2010 3:19 pm

Lisa,

Entocort EC does not bring relief for everyone. It is roughly 65 to 70% effective, in most trials. Some people cannot take Entocort, because they have an adverse reaction to it.

Did you only have one culture test for C. diff, or did your doctor test you 2 or 3 times? Many culture tests miss C. diff, and they show a false negative result on the first one or two tests. Sometimes it takes 3 or 4 tests before the test will show a positive result. If you have C. diff, entocort will not help. If you have a C. diff infection, the main symptom would be severe cramps and abdominal pain. Blood in the stool is common, also, if the disease remains untreated for several weeks or more, but not everyone with C. diff passes blood.

I'm sorry that you're not seeing any progress with your treatment. Have you checked with your doctor about this recently? The Entocort may just be making you worse.

Tex

JoAnn · Post by **JoAnn** » Sun Dec 05, 2010 4:19 pm

Lisa, as Tex said, you may not be able to tolerate the entocort and that's something you'll have to figure out with your symptoms. But I also want to say that even when you're on entocort, it can take a long time for things to improve. It took 3 weeks before I saw any noticeable improvement in my symptoms the first time I went on it. I also noticed that when I first started entocort, (both times) I had headaches, but they soon went away. Sometimes the improvements are so small that you may not notice them daily, but only when you look back over time. There are lots of ups and downs even on entocort. You'll have to figure out if entocort is causing your problems (easier said than done, I know) or whether it's just the stage you are in with mc. I guess I'm just trying to say that it still takes a lot of effort and patience even when you're on entocort. I hope you can sort this out soon so you feel good about your treatment plan. JoAnn

catsrule · Post by **catsrule** » Sun Dec 05, 2010 6:53 pm

I could not take entocort because it gave me insomnia and a racing heart. I am now taking asacol hd and I am tolerating it much better. It seems to be helping. I have only been taking it for a week though.

klhale · Post by **klhale** » Tue Dec 07, 2010 7:21 pm

Lisa, ..it took me 2 months on Entocort to stop the pain , mucous etc.
I think it depends on how bad you are, when you start the Entocort. Hang it there, it will get better.
Be sure not to eat things that you know are bad for you.

Good luck,
Karen

lisa15601 · Post by **lisa15601** » Tue Dec 07, 2010 7:32 pm

My gastro told me to stop because Im having so many side effects. I didnt take it today. I dont feel as dizzy, but I have nausea , and Im gettin a cold and am in pain anyway. The Entocort side effects are killing me.

catsrule · Post by **catsrule** » Tue Dec 07, 2010 7:41 pm

Lisa I know the feeling. Maybe you can try something else.

harma · Post by **harma** » Wed Dec 08, 2010 6:08 am

Lisa have you considered taking a lower dose of entocort? I also had entocort side effect. I started with 6 mg a day and lowered it within two days to 3 mg. That has been working for me very well for over a year now, no side effect and a high enough doses to control the MC. But of course in combination with the diet.

Having side effect of cortico steroids is not that uncommon, they often disappear when you lower the dosage. Maybe I missed parts of your whole story. IMHO your GI is bit to rigorous by taking you of totally and not trying out a lower dosage. Believe me when it comes to MC and any kind of medication, most of the people here are better informed that GI's. I have found more useful information here, than I got from my GI.

good luck with it.

harma

mzh · Post by **mzh** » Sat Dec 11, 2010 8:06 am

Hi,

I concur with Harma. I have been on Entocort off and on since 2005. I can't tolerate the 6 and 9 mg doses -- they burn my rectum! -- and have found that I do very well with one pill every 3-4 days. At the moment I haven't had any for almost two weeks. I'm trying digestive enzymes per the GI doc. They don't stop the D but they do slow it down considerably; I only have it once or twice a day so it's manageable. I'm careful to withdraw from the Entocort gradually, but at such a low dose it doesn't take very long to go off and on it. My GI doc is fine with managing myself this way.

Linda in BC · Post by **Linda in BC** » Sat Dec 11, 2010 11:26 am

mzh

What brand/kind of digestive enzymes are you using? I know we may not have a comparable brands here but I am interested.

mzh · Post by **mzh** » Sat Dec 11, 2010 11:41 am

I used a prescription one, Zenpep which is a pork-based one, for 6 weeks. It gave me smelly gas! I switched to an OTC one, Digest Assure from Procaps; it's an Andrew Lessman product and is quite pure. DA is plant-based and it was far less gassy to me. My GI doc thought it would work OK since I'm on 20 mg omeprazole. If I wasn't on it, he said the the Zenpep would work better b/c it would dissolve in the intestine b/c of the encapsulation. He thinks the DA, not being encapsulated, would dissolve too early in high stomach acid. Hard to really know though!

Post by **tex** » Sat Dec 11, 2010 2:11 pm

Marcia wrote:He thinks the DA, not being encapsulated, would dissolve too early in high stomach acid. Hard to really know though!

I disagree with your doctor. If the DA is not encapsulated, then it's designed to tolerate a highly-acidic environment without any negative effects. The manufacturer surely would have encapsulated it, if a need for encapsulation was indicated.

Tex

mzh · Post by **mzh** » Sat Dec 11, 2010 4:03 pm

I agree with you but I didn't want to get into a debate with him so I just listened to what he said w/o comment.

I've been on the Digest Assure with no help from Entocort for 12 days. My bowels have been 50% liquid most times but it only happens once or twice a day. Today they were 95% normal! It must be the three slices of mozzarella on my three corn tortilla "pizzas" that was dinner last night.

Post by **tex** » Sat Dec 11, 2010 6:48 pm

Marcia wrote:I agree with you but I didn't want to get into a debate with him so I just listened to what he said w/o comment.

That's definitely the best way to keep your GI doc on your side.

Marcia wrote:It must be the three slices of mozzarella on my three corn tortilla "pizzas" that was dinner last night.

Stranger things have happened. A few members have claimed that gluten resolved their D, or their C, (at least temporarily), and resulted in normal BMs.

Tex