Will Entocort become less effective over time?

[Gloria]

Chris,
I don't think it's a goofy thought at all. My mother was in a nursing home for 18 years; it's a very real possibility that I could end up in one. And I know that they don't cater to the residents' special needs. They do what's expedient - and that's put them in diapers and on drugs.

Gloria

[JFR]

Chris,
I don't think it's a goofy thought at all. My mother was in a nursing home for 18 years; it's a very real possibility that I could end up in one. And I know that they don't cater to the residents' special needs. They do what's expedient - and that's put them in diapers and on drugs.

Gloria

This is something I worry about too. It could be in all of our futures. Luckily my mother was only in a nursing home for a relatively short time (1 year) but her regular diet did her no favors even before that. I could never convince her to change it.

Jean

[Leah]

I am just getting to the every other day regimen and am a bit scared of going off all together. Maybe I am better off taking it a couple times a week and just keep it there? Tough decision.

Leah

[tex]

Maybe I am better off taking it a couple times a week and just keep it there?

Of course your guess is as good as mine, but I have a hunch that suggested plan might be beneficial, at least for a few weeks.

Tex

[CathyMe.]

I am just getting to the every other day regimen and am a bit scared of going off all together. Maybe I am better off taking it a couple times a week and just keep it there? Tough decision.

Leah

Leah,
I think we were diagnosed around the same time (February?) and would definitely suggest going slow on tapering off the Entocort. I tried to stop all together and was successful for 9 days and then BAM back to square 1. I am now back down to 1 pill every 3-4 days for 3 weeks and have decided to continue this regimen until mid summer. My GI had to re-schedule my follow up appt. and I can't get in until August so asked the nurse if she could have the doctor call me in more pills ( I have approximately 30 left) and right away got a message from the GI wanting to speak with me before she calls it in and just haven't been able to touch base with her yet. Should be interesting as she wanted me off the Entocort in April/May and I had to talk her into prescribing more. In my case too, I went through a pretty stressful period with the whole MRI and was glad that I had the Entocort. Mind you, this is also the GI who told me to just "try" eating gluten for the heck of it!! UMMMMM No thanks!

[Leah]

Let me know what your Doctor says Cathy. It does sound like you and I have very similar cases. Are you GF/DF/SF ? Are there other foods that you still stay away from? My doctor ( so far) has done whatever I ask. I haven't asked about the long term, but my prescriptions are still being filled at the 9 mg a day dose, so I get a lot at a time. i asked him to do it that way so it would cost me less :)

Leah

[mzh]

FWIW, I would stick with every other day for a loooong time; I'm one who likes to makes changes quickly and it never works. Ya think I'd learn.

[DebE13]

Thanks Brandy,
I went back to the 3mg a day because things were starting to go downhill. I think I'll try the 1 1/2mg next time instead of skipping a day to see if that works better. I stopped the L Glutamine for now. It's probably bad timing on my part but I'm sick to my stomach almost all the time & I've been eating the same few foods. I slept for 12 hours yesterday after work and don't even feel refreshed today.

[brandy]

Hi Deb,

Yea we all have to pop back up a level on the entocort journey here and there. I know you 've been struggling for awhile as I kind of remember your Pred taper off before the holidays.
I was kind of thinking back to when I was taking 1 a day and remember kind of feeling lousy. It does get better, hang with it, Brandy

[DebE13]

Thanks Brandy, I try to remind myself of that period of time when life was much worse than it is now- it makes me realize that I am making progress. I appreciate all your comments and it's the reason why I don't just give up. I remember when I first joined this forum and read comments about acceptance of MC and how it gets easier and I flat out refused to believe that I could get there and was a bit jealous that others felt so matter of fact about the disease but I don't have the emotional issues that used to plague every minute of my waking hours. I still do get angry at times but am evolving to realize that the anger isn't going to help my health and makes me a very difficult person to live with.

God bless all of you here that give me the inspiration that life can get better.

[CathyMe.]

Let me know what your Doctor says Cathy. It does sound like you and I have very similar cases. Are you GF/DF/SF ? Are there other foods that you still stay away from? My doctor ( so far) has done whatever I ask. I haven't asked about the long term, but my prescriptions are still being filled at the 9 mg a day dose, so I get a lot at a time. i asked him to do it that way so it would cost me less :)

Leah

Hi Leah,
Still haven't touched base with my GI. I am GF/DF/SF and have been since January. I can't do any raw veggies @ all and stay away from spicy foods. I had a salad the other day w/plain grilled chicken and tolerated it very well but I had been avoiding lettuce as well whch was a huge loss as I LOVE a good salad. That's great you have a doctor that listens. While I think my PCP is terrific, my GI...not so much!

Deb-I do the same thing and remember when I was running to the bathroom so many times I lost count and feeling sick to my stomach all of the time so I've definitely made progress too! Good attitude to have!