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Posted 1/8/2015 11:54 AM (GMT 0)
I was given Entocort for my lymphocytic colitis caused by a c diff infection. The Entocort is causing me not to sleep. It also makes me shaky and nauseous. The diarrhea is gone but the steroids are making me feel horrible. I'm also taking meds for anxiety and depression. My psych has also given me extra meds for sleep. With the increase in sleep meds I'm still only 5 hours of sleep if I'm lucky. Is there any other treatment for the lymphocytic colitis besides steroids? The steroids are truly driving me crazy. Anyone else having a problem with not being able to tolerate steroids? Please let me know as I'm desperado for relief.
Posted 1/8/2015 2:42 PM (GMT 0)
There are other medications besides steroids. I took colazal for colitis but there are other anti inflammatory meds for colitis. You should talk to your Dr to inform them what's going on.

It's not unusual to have side effects from steroids! Some people have problems sleeping, weight gain, Reflux or GERD,  nervousness, irritability, etc....... What dose are you on of the steroid? High doses usually cause worse side effects.

Do you take strong probiotics? A lot of people on these forms have recommended VSL #3. You can get it online without a script but if you want the strongest stuff, the double strength, it's prescription. Either way, it's often a good idea after you had a c diff infection to re populate your colon with good bacteria. It may prevent another attack of c diff.

Good luck to you.

Posted 1/8/2015 4:04 PM (GMT 0)
Hi jeanneac. Sorry you can relate to this. I checked my dosage of the Entocort generic. I'm taking 3 3mg tabs once a day. I've been taking this dosage for 11 days. I'm supposed to do this dosage for 3 weeks. Then begin to taper. I feel better knowing steroids are not the only option for this condition. I'm taking a probiotic as well as Enteragam. I have an appt with the GI tomorrow which I was to cancel and see him when I finish the steroid. I'm keeping this appt so I can inform him that I'm stopping the steroids ASAP. And to discuss the next step. I am changing drs as soon as I can as I don't feel that hears everything I say. Also his nurse made a gross mistake when she sent in my script. She and the dr had a heated discussion right in front of me because she didn't understand his orders. The nurse also told me to go ahead and take a med that I was not supposed to take until a test for c diff came back. Think I'm done with them after tomorrow's visit. Thanks for your post as I do feel like there is relief in sight.
Posted 1/8/2015 7:27 PM (GMT 0)
Hi, this is my third year on Entocort. I've never experienced insomnia w Entocort. I'm now on a short course of dexamethasone injections, only 3 days. Yet since I started it yesterday, I haven't slept for more than 4 hrs. I don't think it will be a problem since I'll have the last shot tomorrow. When I was on pred, I used to take it in the early morning and my GI prescribed Xanax then.
As long you're not satisfied w your GI, find another one. Hopefully, you'll find someone who is more understanding and would listen to you.
There is variety of meds for colitis out there. Hope you can find the best medicine for you.
Take care :)
Posted 1/8/2015 9:56 PM (GMT 0)
Suchapunim, when did you have the c diff infection? And how did you treat it?

As for the entocort side effects, yes, they can happen to some people. It usually has far fewer side effects than prednisone, but some people still get the steroid-related side effects such as those you are experiencing.

I would recommend you NOT stop the steroid so abruptly. After talking to your doc, if you decide to discontinue entocort, go down to 2x3mg/day for a while. See how you tolerate that. With lymphocytic colitis, that might be enough med to be helpful. And you might notice a big improvement in side effects.

As mentioned, there are other treatments for lymphocytic colitis. But entocort is one of the best. That doesn't mean it's the best for you though. Some people have had success with a several-week course of pepto-bismol (bi****h) every day.
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