Entocort Side Effects

Hi David! I've been on Entocort for the last 6 weeks or so. I thought that maybe it was working for me without any side effects but, within the last week or so, I have had a lot of 'D' that just comes very suddenly. I really don't think it's doing anything for me but, I don't feel 'out of it' at all.

I will be tapering off of it soon as I am getting ready to start Pentasa.

I love entocort - for me it give the benefits of steriods without side effects so I guess I am lucky :)

Aghhh - It seems like I am one of those persons that steriods effects me more than others. I take it twice a day, do you think I should take both in the morning?

I am not sure what I am going to do, but I can not go around stoned for the next years. I now am getting the pred no sleep effect. I fell asleep early last night, cause I was so out of it all day, and the first time I woke up as 11:30 in the evening. I was up another 3 or 4 times during the night and finally at 5:00 it was clear that hanging around in bed was not going to be of any value. If I did not know for sure, I would almost think I was back on Pred.

Thanks for the blood preassure comment soccer girl, but mine is always very very low. I think the last reading was 108/68 or something like that, so this is not the issue.

Since you are on Pentasa and SCD, which might help if you taper, would it be possible for you to taper down to one pill of Entocort?

I would love to go to one pill. I guess I remain unclear on the following.

The pill cam showed ulcers in small bowel. I have been on meds and SCD for about 6 months. Every time I go to the doc she presses on my gut and before it killed me but now it only hurts a bit. Aside from that how can the doc and I know what is happening.
My blood tests are all good but were in the past also.

When I was first diagnosed, the doc said I had a moderatly sever case. That is about a 6 on a scale of 10. I would love to know that SCD and eating all these meds has reduced the severity. And that I could and should down to one pill, but how is that decsion normally made?
Thoughts?
Thanks
David


And as always emom your insight is greatly appreciated Go SCD TEAM..lol

Which blood tests were done? Usually only a CBC is done, which does not show inflammation.

What was the result on your CRP test (the optimal reading is supposed to be less than 1) and your SED rate test? What is the actual number on each? What are the results of the vitamin D, vitamin D hydroxy and PTH (parthyroid hormone tests - these tests can reveal inflammation. Is your B12 level increasing or decreasing and is it above 400?

The tests mentioned in the above paragraph are ALL separate tests but can be done at the same time. However, they are not routinely done.

This really drives me up the wall, because before tapering down, your question about whether it is safe needs to be answered. The best way to do this is not only to do the right tests, but to interpret them correctly. 

Since you have been doing SCD for awhile, and are already on Pentasa, I'd like to think that it is safe to go down, but my daughter would never chance it unless knowing the latest results of the RIGHT tests.  

Hi dfdavidf
Hi there I thought I'd answer your post as I myself have been on entocort since march this year and initially it made me feel stoned too !!!!!
After a few weeks it seemed to be less frequent, initially I was prescribed 9mg for the first three months then I was tapered down and am still on 6mg
I take both of mine in the morning, this was what my gi told me to do, I tend to be awake around six and take it then.
As for your sleeping pattern yep I'm the same as you too !!!!! Phew !!! I bet your glad you find someone aren't you !!!! Lol !!!
I can be exhausted, go to bed at eleven, sometimes earlier and wake up after about two to two and half hours later !!!! As if iv slept all night !!! And then I'm awake foe hours !!!
I end up getting frustrated bcos it's still the middle of the night !!!
Hence why I take my med early !!!!!

As for tapering, I tried to do that myself the other week as I felt that entocort isn't really working for me,cut down to one for two days only and I can't describe to you but all I will say is that something started to stir in my gut that I certainly didn't like the feeling of and bumped straight back up to two.
As njmom stated I'd speak to a doc first, I spoke to my gi who agreed that it needs tapering but I need to be on another med first before tapering down.
I hope this at least has made you feel that your not on your own suffering with these mad side effects, and I hope that your all having a reasonably good day. In the uk where I live it's a beautiful sunny day, me and my hubby rich are off for a lovely roast dinner at our favourite restaurant for what we are calling my last supper as I start my modulen liquid diet tomorrow, I won't bore you my cronhs history as iv posted on here loads of times with my woes and let's just say this is something iv chosen to do as then I'll know for sure, what I can and can't eat, what I'm allergic to etc etc

Lovely talking to you all speak to you all soon, until then take care and if your having a bad day as we say in wales I'm giving you a big (( cwtch))) xxx

I hope you are feeling better today!