Entocort - Should I be feeling better yet?

[bushydougie]

I started Entocort 11 days ago but I do not seem to be feeling any better in fact I seem to be worse. Some days my bms are more frequent and they are looser (sorry!). I am on a weeks holiday but I have zero energy and just want to sleep all the time or sit on the sofa watching tv ( I was hoping by now my energy levels would have picked up and I'd have a great holiday )
My back ache seems to be worse. I sometimes feel nauseous and I keep losing my appetite.
On the plus side the Entocort does seem to be working in giving me more spots!! Oh the joys...

Has this happened to anyone else? I know Cat had a few rough days a few weeks ago. Should I just stick it out? How long should it take for the Entocort to kick in?
I'd greatly appreciate any answers
Thanks
Sam

 

[Babs1957]

I wish I had an answer for you. It's so unfortunate that no one can give us exact answers. Nothing is typical or normal in my experience when it comes to CD or reactions to drugs. It's such a crap shoot (no pun intended) to find what works for each individual.

I've just completed 1st week of 8 week course on Entocort (also on Apriso) and have had no negative side effects so far. I also don't see any improvement.

If it takes 8 weeks to do its job, that's fine with me. I'd rather take loads of Immodium and make multiple trips to loo than to have to endure the torture of Prednisone side effects.

 

[Cat-a-Tonic]

Hi Sam, sorry to hear you're still not doing well. I remember feeling a significant change for the better by day 9 of Entocort, but I'm sure it's different for everyone and my understanding is that it can take several weeks to fully kick in. I've been on Entocort for just over a month now and I have had a few bad days here and there while on it - I was doing not so well yesterday, I think because I overdid it on the weekend and ate something I shouldn't have. And I had a couple of bad days awhile ago which you referred to, in which my pain and d and other symptoms returned and I don't know why - I didn't overdo it or eat anything risky. I guess that's just the nature of this med, it's mild enough that sometimes the bad symptoms can return for a bit.

If you don't start feeling any better in the next day or two, I would definitely call the doctor and let them know what's going on and see what can be done. I think 9 mg is the highest dosage allowed on Entocort, so maybe they'd be willing to put you back on pred or try you on a different med. Good luck, let us know how it goes. And in the meantime, I hope you are able to enjoy your break from work, even if you are just resting the entire time.

 

[bushydougie]

Thank you Babs and Cat. It's nice just to have some assurance.
I was thinking of seeing how I go over the next few days and then calling the doc if nothing changes. I don't want to be feeling this way when I return to work but I guess I'm lucky that I'm off this week and can rest
I know from reading other posts that Entocort can cause a few problems and then settle itself so I just hope thats the case for me. I guess I just didn't expect to feel worse.
Having my flu jab tonight so am prepared to feel worse tomorrow as I've been told it can make you feel a little fluey the day after
My GI did say if it didn't work then he'd put me on pred and aza so we'll have to see

 

[Cat-a-Tonic]

I had my flu shot a couple of weeks ago and I didn't experience any flu-like symptoms from it. My arm felt kind of sore for about a day and that was it. So hopefully you don't experience any symptoms from it either - good luck with it!

It's good to know that your GI has a backup plan if the Entocort doesn't work. I've never been on Aza so I can't comment on it, but if you do end up on it I hope it works for you. And we already know pred works for you, so it sounds like a good backup plan. My GI doesn't want to put me back on pred unless it's a dire emergency, he said if I flare up again down the road he'd put me back on Entocort instead of pred as he feels it's safer. I guess my options are limited as he doesn't want to prescribe such harsh steroids to someone undiagnosed like myself unless it's absolutely necessary.

 

[bushydougie]

Glad to hear that Cat. I've planned nothing for tomorrow just in case and if i don't feel ill then that'll be a bonus!
My GI said he'd put me on pred whilst the aza kicks in as I think it can take 6 weeks or so to take effect. Am hoping though that the entocort kicks in instead though.

 

[Babs1957]

Got my flu shot a couple of weeks ago too...a little ouchy at injection site for a day, but other than that, good to go!

 

[hoiks]

Good luck to you and taking Entocort. I did not fare well on that drug myself, it seemed to make things worse and after moving back to Seattle, WA from Spokane, WA and getting back in touch with my original GI doctor, she started tapering me off Entocort immediately and we started azathioprine agian. When I left her care that's what I was taking and seemed to be doing well, but then I moved, switched doc's, and had a baby...needless to say I returned to her a mess especially after taking Entocort. I wish you well and hope you have better luck with the drug than I did!

 

[bushydougie]

Thanks hoiks.
I can't say I'm feeling any better since starting Entocort. I often feel worse dur to some of the side effects I'm getting. I've only been on it for 2 weeks so am hoping maybe the side effects will go soon... How long were you on it for and how did it make you worse?
I seem to get some nausea, dizziness, am still very tired, my bms are closer to d than they were and my skin is terrible with spots

 

[user 80684]

I have been on Entocort for months with no relief, after that i was put on Pred wich actually helped. I think thats the way you are going.
But who knows, its only two weeks.

About side affects, i remember no side affects at all.
Actually Entocort is know for being easy about side affects, but i guess its personal to each of us.

 

[bushydougie]

Hi BloodDrama and thanks for your reply. I was on a low dose of pred (20mg) for a few months.This worked fantastically but my GI didn't want me on it long term. When I came off pred my symtoms started returning and that's when he put me on Entocort.
I thought Entocort would be easier than pred but it seems worse. Maybe because I was on a low dose of Pred and am on the normal 9mg of entocort? Who knows...

 

[Astra]

Hiya Sam

When I finished the Pred I was put on Entocort too, it did diddly squat for me, just made me foggy and mental!
Then went back on Pred, the difference was immediate! I started on 20mg and I'm on 5mg now for one more week, it's took nearly 3 months, but I feel really well!
So that's a total of 10 months on and off Pred this year, but it's healed me well!
I'll never try budesonide (Entocort) again! Give me Pred anyday!
Have a word with the doc Sam, it's not working for you.
xxxx

 

[bushydougie]

Thanks Joan.
I'm a bit disappointed as I was hoping to feel better this holiday ready for the run up to Christmas at school...
I'll try and get hold of the doc and see what he says
x

 

[Cat-a-Tonic]

Hi Sam, sorry to hear the Entocort is still not working for you. Did you call your doctor? What did he say?

From the looks of the posts in this thread, I may be in the minority when I say that Entocort is still working pretty well for me. I do have the occassional bad day, usually about one day a week, but that's still a vast improvement for me. I'll take one bad day a week over 5, 6, 7! I'm supposed to taper down to 6 mg starting next week, so we'll see how many bad days a week I have then. Wish me luck! And I wish you luck with whatever your doc says - hopefully he puts you on pred/aza. Let me know how you're doing!

 

[hoiks]

I was on it for almost 6 months. I had horrible problems with abdominal distension and nausea, and after switching doctors my current doctor feels that it contributed to my depression. She doesn't like the drug herself, and started tapering me down not long after she resumed my treatment.

 

[bushydougie]

Thanks Cat. I just don't know what to do... Haven't talked to doc yet. Thought I'd wait a few more days to see how I get on. Did think I might have felt a little better yesterday but only marginally. Today though I've had a lot of d (more than normal) so feeling rubbish. Have asked doc about chickenpox though as we have an outbreak now in Nursery. He said it's nothing to worry about if you've had it before (still don't feel confident about it as why does it say it in the leaflet?!)
Anyhow I do wish you lots of luck when you start tapering the Entocort. In what way did you feel much better on Entocort? I do still feel better than I did pre pred but still in no way right I guess.

 

[Cat-a-Tonic]

Sam: I felt better in many ways when the Entocort kicked in. I suddenly had way less d (about once a week now rather than 5+ days a week), less fatigue/more energy, less nausea, less abdominal pain (I still get the occassional jab of pain in the lower-right but it's far less frequent than it had been before I was on Entocort), and just generally felt more like my "old self" again. It was a noticeable and dramatic difference in all of my main symptoms. Like I said earlier, I still have about one bad day a week, but that's still much better than the majority of my days being bad ones. I do think that pred worked better for me than Entocort (I don't remember having any bad days during my short run of pred), but I'm certainly not complaining because both work pretty well for me.

Sorry to hear you're having yet another bad day. If it were me, I'd definitely call the doctor right away and say it's not working and ask for the pred/aza combination. You need some relief so you can get through your day without struggling - believe me, I know! I work full-time, and before the Entocort many days were a struggle just to get through. I'm not really looking forward to tapering off of it, I suspect the bad days will become more frequent, but we'll see. I start tapering on (I think) Tuesday of next week, so I will find out soon enough.