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NCOT--Entocort

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Crohn's Disease
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Posted 5/12/2016 4:40 AM (GMT 0)
Hey NCOT...you mentioned you didn't feel like the entocort was working for you. Have you had good weeks on it? I feel like I will have a few days or a week where I think oh this is helping, and I wake up one morning with all my symptoms are back. Just curious what your experience had been.

I'm convinced at this point it's increased my anxiety and a factor insomnia. If I'm going to deal with that, then I just as well be on pred.

thanks!
Posted 5/12/2016 6:53 AM (GMT 0)
Not NCOT, but I've been on entocort for a guess two months now? Anyway I'm having the same results as you. There are some days where I say hey this is helping, normal stool. Feeling pretty good. Then suddenly I'm back in the bathroom and feeling lousy. I don't seem as puffy as I am with prednisone. I never can recover from all the steroids causing insomnia anyway, so that's a constant issue. But I really don't think entocort works as well for me as pred did.
Posted 5/12/2016 2:47 PM (GMT 0)
Sparkleplenty - yes, pretty much. At one point I was doing really well - sleeping through the night most nights and having hardly any urgency or abdominal pain. I haven't completely relapsed but I've slipped back into the same pattern of having good days and bad days. The only consistency at the moment seems to be the nocturnal BMs. I'm waking up 3x a night to have a BM and it's really pissing me off.

I have reduced my dose to 6mg, but this started happening when I was still at 9mg - and dropping to 6mg doesn't seem to have made it any worse.

I'm not sure about side-effects. For a while I was deffo having some weird mood swings, which might have been a result of Entocort. Or, rather, exacerbated by Entocort, since there's no way these came completely out of the blue but rather were a result of long-standing stress and other personal issues. Even high doses of pred never gave me steroid-related psychosis, so I seriously doubt Entocort could.

I did take Entocort once before, about 6 years ago. And while not quite as good or as fast-acting as pred, it still worked much better for me back then than it is doing now. I think I have developed steroid resistance as a result of all my time spent on pred - I don't think if I went on pred now it would work as well as it used to.
Posted 5/13/2016 2:41 AM (GMT 0)
Thank you both! Interesting that I'm not alone in the inconsistency. Sigh.

I get steroid psychosis for sure on pred, and I remember the last time I was on entocort I had to stop because the mood/irritability and insomnia were so bad. I figured since it had been 7 or so years it was worth a shot.

I'm so stressed about the GI situation, and the other day I realized that duh the entocort was probably having an impact on how well I'm handling things.

Since I'm getting all that, and it's not consistently helping, I'm going to talk to my GP about tapering off. Xanax isn't helping either. Just feel like a horrible ball of anxiety right now. :-(
Posted 5/13/2016 6:45 AM (GMT 0)
Now that you mentioned that, maybe that's why I've been having so much extra anxiety and not coping with things very well either. Feel like an emotional wreck some days. I'm hoping I get to taper down to 3 mg soon. Not really happy with the results and I certainly don't need any help with having more anxiety. Hope you get to taper soon too!
Posted 5/13/2016 2:12 PM (GMT 0)
There's no point being on medication if it isn't working, especially steroids. In theory, Entocort is absorbed in the gut and doesn't have any systemic side-effects, but in reality this is bollocks. It takes longer, but eventually Entocort will cause similar side-effects to pred because a small amount of it leaks into the bloodstream.

Me, I'm worried about my bones. I developed oesteopenia from my time on pred and some of my teeth are displaying signs of bone loss that can't be reversed. It may have been coincidence, but my teeth got worse again while I was on Entocort. Went to see the dentist and hygienist. My previous dentist fobbed me off for years, so now my bottom front teeth are in a perilous state. Current dentist doesn't want to pull out the worst affected tooth, in case it destabilises the surrounding teeth. However he thinks this tooth won't be saveable in the long run. I'm chronically worried about my teeth now; hate it.

Anyway, I've been quite disappointed in Entocort. Was hoping it would help far more than it actually did. Sorry that you and Jen haven't had any better results either.
Posted 5/13/2016 4:07 PM (GMT 0)

NiceCupOfTea said...
There's no point being on medication if it isn't working, especially steroids. In theory, Entocort is absorbed in the gut and doesn't have any systemic side-effects, but in reality this is bollocks. It takes longer, but eventually Entocort will cause similar side-effects to pred because a small amount of it leaks into the bloodstream.

Me, I'm worried about my bones. I developed oesteopenia from my time on pred and some of my teeth are displaying signs of bone loss that can't be reversed. It may have been coincidence, but my teeth got worse again while I was on Entocort. Went to see the dentist and hygienist. My previous dentist fobbed me off for years, so now my bottom front teeth are in a perilous state. Current dentist doesn't want to pull out the worst affected tooth, in case it destabilises the surrounding teeth. However he thinks this tooth won't be saveable in the long run. I'm chronically worried about my teeth now; hate it.

Anyway, I've been quite disappointed in Entocort. Was hoping it would help far more than it actually did. Sorry that you and Jen haven't had any better results either.

I am sorry about your teeth, that type of stuff stresses me out badly. I have a lot of recessing in my gums and my teeth are very sensitive. I am sure the steroids didn't help, they were sensitive before, but worse now. Can they do a root canal and crown on your worst tooth? That should keep the surrounding teeth in good shape. I know root canals themselves are not fun, but if it's an incisor, they only have one root. I had one on my last molar, omg, it had 4 roots and they were over 23mm, one was really twisted. just terrible. Horrible tooth really. I hope I can hang on to the molars I have now or I will go to a sedation dentist to get it handled. I can not be awake for that again. I had to go back multiple times because of the long roots. smhair
Posted 5/14/2016 2:47 AM (GMT 0)
Oh, sorry to hear about your teeth NCOT. Ugh.

I started tapering off Entocort this morning. I have to say I'm really tempted to taper faster than what my old GI instructed. He had me step down to 6mg for 2 weeks and then 3 mg for 2 weeks. I probably won't, but it's tempting.
Posted 5/14/2016 6:26 AM (GMT 0)
I hear you NCOT. I've already got osteopenia and my teeth are just awful now thanks to steroids. I've lost too many molars the last few years, and I've also got sensitivity issues thanks to gums recession. I can't possibly even think about having to spend hours again in that dentist chair getting work done. I've spent thousands of dollars trying to save them, but I know as long as I keep up these steroids it's useless.
Posted 5/14/2016 1:36 PM (GMT 0)
Two of my bottom molars bled during brushing today! ;_;

Seriously, I don't know what more I can do. I brush thoroughly with an electric toothbrush, I use those little interdental stick thingies, I floss. The hygienist says my teeth are really clean. They deffo look clean and aren't stained. But they are crooked and overcrowded, and I also have an overbite. I should have worn a brace when younger and had a couple of teeth pulled out, but my parents talked me out of it - I bitterly regret having listened to their crap advice now. I also bitterly regret not having looked after my teeth better when younger.

Nothing I can do about it now, I know. And I think between the Crohn's and the steroids, I wouldn't have avoided problems with my teeth entirely. But I reckon it needn't have got as bad as it has. If I could afford it, I'd pay whatever it cost - thousands of pounds - to sort out my teeth currently, even if it meant pulling half of them out.

@nssg - Yes, gum recession is my issue as well. My worst tooth is an incisor; they can't do root canals on those, can they? (Okay, I just googled it and it appears they can.) My dentist didn't mention a root canal that I can remember, but my memory is so bad I can't be sure. I'll ask him next time I see him, but that won't be for about six months now :-/

I've had a couple of root canal treatments on my molars - not fun.

@Jen - Eek, that really sucks. Well, more than sucks, really, it's horrible. Steroids are horrible.
Posted 5/16/2016 1:46 AM (GMT 0)
I'm on entocort now for the second time. I was on it in February and it seemed to work really well then. This time it was a lot slower to start working and doesn't seem to keep things as controlled. I don't have a lot of side effects that I notice, although it might be making me more anxious. I've got a mystery problem with my liver so my GI doesn't want to start me on anything more serious for the Crohn's til we get that figure out, but I'm getting tired of this. But on the other hand I'm not REALLY sure I want to be on any of the strong stuff...
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