Entocort!!! Please help!

[mharvey90]

I am hoping that anybody who has taken Entocort could please post their experiences with it, whether good or bad. I just started it today and understand that it is a much milder, well-tolerated steroid. Are the side effects much less than prednisone? Does it help to feel better almost as much as prednisone? Much appreciated feedback:smile:

 

[farm]

I was on it for 6 weeks and had no side effects but no help either. My GI took me off of it and put me on predisone for 12 weeks.

 

[s.a.m.]

I am hoping that anybody who has taken Entocort could please post their experiences with it, whether good or bad. I just started it today and understand that it is a much milder, well-tolerated steroid. Are the side effects much less than prednisone? Does it help to feel better almost as much as prednisone? Much appreciated feedback:smile:

I have been on Entocort for almost a year. I didn't really notice any side effects, except that lately I think I am starting to retain some fluid in my face...not full moon face, but a bit.
I have never been on prednisone, as I refused to be treated with it.

 

[mharvey90]

Thanks farm. Sam, has Entocort helped you to feel better?

 

[GoDucks]

I started on Entocort for the first time just a few days before you did. So far, the only symptom I am aware of is that I CAN"T SLEEP!!! Yeah, that part, at least, seems to be just like Prednisone, but maybe the assorted other things Pred does to us for entertainment will not appear. Keep us posted on how it hits you.

 

[s.a.m.]

Thanks farm. Sam, has Entocort helped you to feel better?

I did feel better, but it did not work for me on its own. I also have started Remicade and now I am weaning off the Entocort. The only problem now is that I have gained some weight, which I am hoping calms down once I am off the steroid.

 

[kasper87]

I have been on entocort forever. I have been on 6mg for years and 9mg for 6 months at a time.

Side effects are mild such as Rare acne or water retention but even thats NOT COMMON because only a small percentage gets absorbed in the bloodstream.


Back pain is the most common side effect.
I have never been sure if entocort has worked or working for me because I have been malnourished for quite some time. Now that I started TPN last month.. We wIll see where entocort and remicade take me.

 

[bigtruck]

i've been on and off entrocort for years with no side affects,how well it works depends on where your inflamation is as it works localised in the terminal ileum area, hope this helps and keep your chin up.

 

[mharvey90]

Ohh no, sleep problems are no good, I remember not being able to sleep at all on the prednisone.

kasper, what's TPN?

bigtruck, my terminal ileum was removed 7 years ago, but my inflammation is in that general vicinity i believe (where the ileum WOULD be.)

So far, I haven't started to feel any better with the entocort, and it's been 5 days. I'm a little worried, because when I started the prednisone, i felt 95% better within 2 days. =/

 

[Ang999]

I was on Entocort for 3 months (3 pills a day for 1 month, then 2 for a month, then 1), together with Pentasa (for 6 + months). I definitely saw an improvement in my symptoms actually have had lots of completely normal days! But now that I stopped (about 1.5 weeks ago) I think I'm starting to have issues again.

My GI hasn't officially diagnosed CD yet, but because I was have CD like symptoms thought we should try it. Looks like I will be going back to see him again soon.

I always took the Entocort first thing in the morning and didn't have any problems with sleep.

 

[PaulaJean]

M - I responded to another post of yours that Entocort is serving as a life saver for me right now. I hadn't seen your posts that Entocort didn't work for you...sorry to hear that...I dread having to go to any more "severe" of a medicine than entocort some day, but suppose it's inevitable. I have had moderate Crohn's since age 19 (am 42 now), but had a surgery that removed a total of 21 inches (some small and some large intestine). No Colostomy required thankfully.

 

[GoJohnnyGo]

Entocort really helped clear up my Crohn's inflammation. Side effects were minor.

 

[Katiepede]

Entocort has been really good for few, have just finished, and have just posted (in the wrong place it would seem) asking about how long the affects last.. (forgive me I am new)!

I did put on a little weight.... but who cares...!
I can walk here, walk there, even go on the motorway in traffic without getting scared of 'you know what' happening!

Cannot still eat nasties (dairy, oily stuff ), but I feel like my life revolves less around being ill, which is lovely...
I am just hoping that this lasts... and wonder if anyone either through this thread or the other one can give me an idea of their experience in how long they feel well for?

Katie

 

[cdmn]

I swelled up and gained quite a bit of weight after being on entocort for a while. Didn't like it at all for primarily that reason. I've since dropped about 60 pounds since my upper weight of ~220 while on it. Not all of that was entocort weight, but I really don't think it helped.

As we all discover, it's sometimes hit or miss with these treatments, so hopefully it will do you some good.

 

[Sparky]

It works a treat for me - no side effects. Currently using it as a bridge while I wait for Imuran to kick in, and so far so good.

 

[michellec312]

I was on it for about 3 months. Its really expensive and didn't do anything for me at all.