(update) entocort tapering trouble,..(?)

[xrayzerase]

hi
haven't been here much-first just so much to try to get back to "normal" life--and then-the holidays..and still-just trying to deal.
i am still on 2 pills of entocort. called my dr last week and asked if i could go 3 weeks between lowering the pills. yes.
but-since lowering (taking away just 1 pill out of 3) i have been having worse cramps (lower ab and near anal area-and also slight nausea before making first stools in am (which i used to get pre-treatment).
i also had a few very loose stools lately.
it all may be that i am trying to "eat" again-i am not going crazy-but i did have pizza w pepperoni -but not much else that would make me wonder--and when i had the pizza-like a week ago-was not when i had the worst cramps--and the nausea started like 4 days ago-so-i can't quite blame the pizza.
i am trying to watch food and drink more ensure instead just to rule out if diet plays a role in why i am feeling not as well--
maybe it just takes time to get used to getting lower dose of entocort?
i dont know.
wont call dr yet--dont want to go back on 3 pills again.
i have been on entocort almost 4 months now.
worry i may not be in remission and may need steroids "long-term"
and if so-he may do the remicade if i can't get off the steroids.

i know-too soon to say
just feeling discouraged
i was really hoping (still hoping) i am in remission and can do ok eventually on just pentasa.
oh: talked w my dr and w my psychiatrist: they both agree taking the .5 ativan 3x day for the heartburn is ok to do longterm.
that is a relief-i know it can be addictive--and if i get into trouble down the road-i will deal w it then--but for now--i am just SO glad to have NO heartburn.
just now..have to deal w the crohn's and the dumb steroid thing.
sorry-just-
on a good note though-"life" is going well-(work-wise)-looking into a grant for these books i am working on-and it looks good-so-at least even tho i feel not well these days-i am getting a lot of work done still-and i am glad for that.
...
happy new year (in a few days) to all
and hope everyone had nice holidays
andrea

 

[andilynn09]

I also had trouble getting off entocort, just from lowering from 3 to 2 pills a day. My GI ended up and put me on prednisone instead, entorcord was not strong enough to be helping like it should. I ended up being on the prednisone for 5 months, and that is a much stronger steroid than the entocort.

I was not able to stay achieve remission with pentasa alone. After being on pentasa from day one when i was diagnosed in April, I had three months of entocort May thru July June, and started prednisone in place of entocord at end of July. I couldn't get off the prednisone either, so she added azathoprine (Imuran/Asacol) in August. Finally after 5 months of prednisone and 4 months of gradually increased doses of azathioprine, I am steroid free and have been in remission for a few weeks.

I would say after 4 months on the entocord, it's time to start exploring some med changes. My doctor said she would have done remicade next if azathioprine didn't work, but always tried to exhaust all oral meds before she goes to remicade infusions since it's such a strong med that can have it's own complications. Good luck.

 

[xrayzerase]

i'm all over the place reading. my dad is mad at me for going so crazy trying to researchstuff i know nothing about. i don't know..i guess i do get crazy--for awhile on entocort i was a bit better and actually started to live a bit again and work--but now...

anyway-just-yhanks for your reply
especially helpful: is trying the oral meds like 6mp first before going to remicade.
ultimately-that was what my dr first mentioned=6mp -stay on entocort-and then raise dose of 6mp (if i can tolerate it) and then lower entocort.-i guess his hope is to be on just 6 mp and pentasa. not sure. i guess he can always lower the 6mp and add remicade.
it's so confusing.
and flares are a nightmare-i know everyone knows.
it's worse than any flu i ever had.
and what is scary is that it can get worse.
just..hope the meds work
it seems lots of people have hard times finding a med that works (besides high dose pred -which you can't take forever anyway..)
just trying so hard to not be depressed
i am still pretty sick-so am in -and i hate this-who likes it?
i know.
just-miss being active and..

just--hearing the bad news friday is hard. and feeling sick as well makes it worse. though today is not as bad as yesterday and all last week. it is day 5 of 9 of entoort again-but-it seemed to work better before--maybe i'm just worrying-or forgetting that it took awhile for the entocort to work last time too..

anyway-thank you
i just feel like i am losing it right now
its like as soon as you get close to being back into life--crohn's hits again .
gotta keep fighting--but it is hard at times.

 

[Jeff D.]

I have never seemed to have much tapering trouble since most of the meds I have taken I have just quit cold turkey and never had problems but I guess I am lucky. I wish you the best because I have heard how hard it is to taper off of stuff.

Good luck

 

[andilynn09]

Hang in there....it is frustrating, but most of us have been there. I forget how long you have been trying to get out of this flare, but I was first diagnosed in March or April of '06 and it took me til the end of the year to find a combo of meds that worked and to be able to get off steroids. 9 months was way longer than I was planning on, but it happened eventually...and it will for you too.