A bad day on Entocort?

[Cat-a-Tonic]

I've been on Entocort for just over 2 weeks now. For the last 5 or 6 days, I've been feeling like it has really started to kick in. I've been having normal, solid BMs and no nausea and much more energy. Every day I felt better and better - until today. I'm having some pain today, my appetite isn't great, a bit fatigued, and the scariest symptom - I had some bright red blood on the TP this morning (although no d). This worries me. Has anyone else been on Entocort and had a bad day like this while on it? I didn't eat anything funky and I didn't overdo it or anything like that, so I'm not sure why my body is behaving this way today. Just hoping to hear from others who have been on Entocort if this is normal or not, and if I should call my GI or not worry about it - thanks!

 

[bushydougie]

Afraid I've got no advice for you Cat as I've not been on that medication but I do one to hope that it is just one bad day and that tomorrow you will continue to feel so much better again!

 

[Astra]

hiya Cat

give him a call, Entocort is only a 10% derivitive of Pred, in that it only goes thro the stomach to the small intestine then the start of the large intestine. Whereas Pred goes thro the whole system, so depending where your inflammation is, it may not be reaching it? hope that makes sense?
Have you taken any indigestion remedies? These can erase the special coating on Entocort and stop them from working.
I didn't like Entocort, would much prefer Pred! Entocort didn't really work and made me foggy and disorientated!
xxx

 

[Cat-a-Tonic]

Thanks, Sam & Joan. I ate a little lunch and feel somewhat better, and haven't had any more blood on the TP since this morning. Hopefully it was just a fluke and I'll be feeling better again by tomorrow. I did put in a call to my GI's office, waiting on a call back.

Joan, no I haven't taken any indigestion remedies. I would prefer pred too, I didn't get chronic headaches while on pred like I am getting on Entocort, but my GI has said he would rather I be on Entocort right now. He thinks pred is too harsh and he doesn't like to give it to people who are undiagnosed, even though he knows I've had a good response to pred in the past. He said at our last consultation that if he were to put me on pred again, it would be at a low dosage (10 to 20 mg) and for about 3 weeks at the most. So maybe I can talk him into that, but it's somewhat doubtful. Plus, the Entocort has been working very well up until today - I'm hoping today is just a fluke and I'll be feeling great again by tomorrow.

 

[Astra]

Aw hope so too Cat!
see how you feel tomorrow!
xxx

 

[4peace]

I have good days on Entocort as far as D goes, but I feel very fatigued and pukey and my stomach growls exceptionally loud since being on Entocort. No headaches like you though......I've been on it for almost 2 months now and feel much better in some ways. Hope it all works out for you!

 

[NatalieMT]

I have been on Entocort over a year now. I seem to be a little bit up and down on it. For the most part I feel pretty good, still going to the bathroom quite a few times but things seem more 'normal' and the pain I was getting decreased dramatically. I did go through a really rough time on it though, I was exhausted, felt totally wiped out, spent 3 weeks off work etc. Had to up my dose of Entocort to get back on track.

I know I'd be a lot worse off without the Entocort but at that stage it didn't feel like it! I have also taken Pred. and again it helped me but given the extent of time I have spent of steroids so far it's probably safer for me to be on Entocort. I can understand why your GI wants you to stick with it but from your part it's probably really not much fun! Hang on in there though - hopefully things will pick up from this point onwards!

 

[Cat-a-Tonic]

Thanks all for your input. Natalie, it's good to hear from someone who's been on Entocort for a long time - and glad to hear that I'm somewhat normal, in having good & bad days on it. I'm still having a rough day today but am starting to feel a little bit better. My morning started out with d and nausea and some pain, so I took some Lomotil and Zofran and I managed to make it in to work. Now I'm having some tea and just trying to take it easy and get through the day.

 

[bushydougie]

I hope the rest of your day has been better Cat. Keep us updated on how you are going.

 

[Cat-a-Tonic]

I'm hanging in there, but still not great. I'm feeling a bit better and having less gut pain and d, but my annoying Entocort-induced chronic headache is pretty bad right now. I've been playing phone tag with my GI's nurse, currently waiting for her to call me back. I'm hoping she'll say that I can start the Amitriptyline today because my head is throbbing in pain. I'll post an update when I do finally get to talk to her.

 

[Cat-a-Tonic]

Just got off the phone with my GI's nurse - my GI is putting me on 25 mg of Amitriptyline now, for the headaches. Yay! They want me to follow up with them periodically so they can track my symptoms, for now they're not putting me on pred or anything like that. I think yesterday & this morning's pain, d, and blood were just a random thing, but if it happens again then I will see if they can try pred or maybe bump up my dosage of Entocort.

 

[bushydougie]

Good luck Cat. I hope this finally works for you. You deserve to feel better

 

[NatalieMT]

Good luck with the Amtriptyline - hope you find some relief soon! *hugs*