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Tapering Asacol - Fooilsh or what?

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Ulcerative Colitis
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Schmoner
Regular Member
Joined : Apr 2007
Posts : 26
Posted 9/30/2007 9:28 AM (GMT -8)
Hey

Not posted for a while, but here goes

By some strange idea of the mind, wanting to get as 'drug' free as possible I decided to start tapering my meds a few weeks ago.  I wsa taking Asacol 2tbs x 3 daily.  Decided to cut it by one tablet each two week.

Consequently - I'm starting to flare. I'm notcing blood, the noises, and severe C .  I'm not scheduled to see my consultant for another 5 months, but I kinda guess he's gonna say 'Pred, Pred, Pred'   I really don't wanna go down that road after all the symptoms both during, and more so, after getting of the Pred. acne like you wouldn't believe etc etc blah blah.

Am I really gonna have to go back on the Pred folks?

I've been hammering my Prednisolone Rectal Foam (20mg), and using it about 6 times a day, but it just doesnt seem to be making any difference, and for Proctitis, surely I should have noticed a slight improvement?

I'm really getting freaked now about haveing to go on that horrible stuf again - anyone have any sugestions to try and nip it in the bud, or anything to avoid the dreaded pred?

thanks

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quincy
Elite Member
Joined : May 2003
Posts : 33572
Posted 9/30/2007 9:43 AM (GMT -8)
Hi..why would you want to get off the Asacol? 6 daily isn't high.

Are you still at 2.5 pred daily?

I don't know the daily dosage of the steroid enemas....how does that compare to what you're doing?

6 times daily doesn't make sense somehow.

By severe constipation...you aren't having bms once a day?

Bleeding...are you having urges to go just having blood?

I don't think pred is something you would need to consider at this time at all. Have you tried any 5ASA rectal meds?

quincy
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Schmoner
Regular Member
Joined : Apr 2007
Posts : 26
Posted 9/30/2007 9:49 AM (GMT -8)
Hey Quincy

I know - In hindsight, if it isn't broken, don't fix it, ir. Leave the ASACOL alone!

I'm currently on No pred at all.

I'm having BM's but passing generally mucus/blood and very very little stool.

Urges I have are 9/10 times passing gas.

Never uses 5ASA ectal meds, / I was always let to believe that they're no good when dealing with a flare, only keeping it in remission once dealt with?

would increasing my daily ASACOL help?

thanks again
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quincy
Elite Member
Joined : May 2003
Posts : 33572
Posted 9/30/2007 10:12 AM (GMT -8)
Hi...curious how you would have assumed 5ASA rectal meds are no good for treating flares?

I would suggest you give them a shot. I've only been using them for over 18 years..

So, you're having how many bms daily? Are you having butt pains during the urges?

I don't see any probiotics on your list...I strongly suggest them.

What asthma meds are you on? list too long has me wondering.

quincy
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MitzMN
Veteran Member
Joined : Feb 2007
Posts : 679
Posted 9/30/2007 10:27 AM (GMT -8)
I might be missing something, but why don't you bump up your dose of Asacol? If it got you into remission or kept you in remission, why are you going off of it?

I wish doctors would do a better job of stressing the fact that this is a LIFELONG condition that waxes and wanes. It's unlikely you will stay in remission if you go off your meds -- at least not for the long haul. If your body is responding by going into a flare as you're reducing your meds, why not go back on them to at least try to stop the flare from getting worse?

This is another reason to not quit your meds: Asacol has few side effects. Prednisone has lots of them. If you quit your Asacol and flare, you might have to go on meds that cause side effects to get the flare back under control again.

It seems elemental that for all of these reasons, it just doesn't make much sense to go off your meds -- unless, of course, you're having side effects from them or your doctor tells you to or you want to have a flare. It's asking for trouble.

Mitz
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Schmoner
Regular Member
Joined : Apr 2007
Posts : 26
Posted 9/30/2007 11:14 AM (GMT -8)
Thanks everyone for advice so far.....

I wsa on pred for 3 months, most of it @ 80mg, then worked down, so you can imagine the side effects.

I've always read and understood that 5ASA's are for maintaining remission, and will not help in dealing with a flare.
I'm currently maintaining the original dosage (2x3 daily) Do you think increasing this will help, and to what level?

BM's quincy, I'm estimating about 5-6 trips daily, but as mentioned, nothing much worth going for, other than small amounts of blood/mucus.

My medication for asthma I very much doubt is affecting anyting, nohing has changed for the last 10+ years and i've been on such meds for nearly life, so it's unlikely that they may be affecting it do you think?

In terms of Pro-Biotics, I have been taking 1-2 'Jarro-Dophillum EPS' per day, a very high potency PB tablet.

any more advice is much welcomed folks - thanks
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Beth75
Veteran Member
Joined : Jul 2007
Posts : 2158
Posted 9/30/2007 11:20 AM (GMT -8)
Hey Schmoner,

I tapered my Asacol (by forgetting to take my pills half the time) and I got a flare. It took me ten weeks of taking 4800 mg of Asacol a day (my maint dose) to go from a mild flare to 1 to 3 bm's a day w/little or no blood and stools were pretty well formed. I flared b/c I wasn't taking my full dose and the asacol helped me to get mostly out of it. I then had to stop the asacol b/c of other reasons. I'd give almost anything to be able to take it again. I responded better to that than I am the prednisone........go figure!

I have mild/moderate colitis near the rectum.

HTH!
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potty girl
Veteran Member
Joined : Dec 2006
Posts : 835
Posted 9/30/2007 11:26 AM (GMT -8)
I take 6 asacol a day also, but when I start having problem I up it to 9 a day it works for me, I have taken up to 12 a day. I cant take pred so I work pretty much with asacol and canasa suppositories ( thanks to Quincy for the rectal meds). I quit trying to go under the 6 a day I flare every time I tried. Have you went back to the 6 asacol a day.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7800
Posted 9/30/2007 11:38 AM (GMT -8)
Hi Schmoner,

Asacol isn't just for maintaining remission. It can also help you get out of a flare. Asacol and Rowasa have helped me get so much better than I was back in March when I was severely flaring (and first diagnosed). I currently still have a little rectal inflammation, but that may be because I stopped taking the Rowasa for a while. My GI doctors have never suggested pred for me. They have just upped my dose of Asacol from 6 at first, to 8, then to the max...12 pills/day. It's interesting how different GIs suggest things differently. Good luck with getting out of your flare.
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Schmoner
Regular Member
Joined : Apr 2007
Posts : 26
Posted 9/30/2007 11:46 AM (GMT -8)

Thanks everyone, i'm really getting some good advice.

What I always wonder, is,will upping my ASACOL now help me, with me being so constipated. (Can it get to the source if you know what I mean?)

Any advice very welcome - thanks everyone

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quincy
Elite Member
Joined : May 2003
Posts : 33572
Posted 9/30/2007 1:07 PM (GMT -8)
You're reading some interesting info....all 5ASA meds are for treatment and tapered to maintenance if the treatment dosage is high. I've been on it as I mentioned for over 18 years...a while for the info to "be out there". You've been misinformed and it's affecting your perspective and possibly expectations.

I personally wouldn't up the asacol, but you could do it to 8 daily...taking it in two divided dosages instead of 3.

Are you eating enough?? You should still be producing stool if you're not having diarrhea.

I didn't ask about the asthma meds regarding a connection to UC..just curious. Are you on a preventer, rescue and maybe something like Theophylline and/or Singulair? Sharing...

Are you interested in requesting a 5ASA med (I would suggest retention enema such as Rowasa or if you're not..Salofalk)....if so..call your doc tomorrow and ask for it and start it...you won't know how much it could help until you try.

q

profile picture
Schmoner
Regular Member
Joined : Apr 2007
Posts : 26
Posted 10/1/2007 12:58 AM (GMT -8)
Hi Quincy,

thanks for the info.

It does seem that I have been mis-informed along the way, you're right.

I think i'm gonna try increasing the Asacol to 9 per day, 3x3.

in terms of eating, I'm eating just as before, I do love my food, and it takes a lot to stop me eating, which is why I always begin to worry, when I stop having as frequent BM as usual. I'd say i'm not passing anywhere near usual, and as mentioned before, mostly mucus/blood.

I'm not able to see or get in touch with my consultant, so it's off to my GP (not holding out much hope though)

The Asthma meds are a combination of Prevent/Relief : Theophyllin Slow release 750 daily, singulair, Ventolin by Nebuliser x 3 daily, Bricanyl turbohaler, Flixotide Inhaler

Thanks again
profile picture
jbitBama
New Member
Joined : Aug 2007
Posts : 15
Posted 10/1/2007 1:22 AM (GMT -8)

Schmoner said...
Hey

Not posted for a while, but here goes

By some strange idea of the mind, wanting to get as 'drug' free as possible I decided to start tapering my meds a few weeks ago.  I wsa taking Asacol 2tbs x 3 daily.  Decided to cut it by one tablet each two week.

Consequently - I'm starting to flare. I'm notcing blood, the noises, and severe C .  I'm not scheduled to see my consultant for another 5 months, but I kinda guess he's gonna say 'Pred, Pred, Pred'   I really don't wanna go down that road after all the symptoms both during, and more so, after getting of the Pred. acne like you wouldn't believe etc etc blah blah.

Am I really gonna have to go back on the Pred folks?

I've been hammering my Prednisolone Rectal Foam (20mg), and using it about 6 times a day, but it just doesnt seem to be making any difference, and for Proctitis, surely I should have noticed a slight improvement?

I'm really getting freaked now about haveing to go on that horrible stuf again - anyone have any sugestions to try and nip it in the bud, or anything to avoid the dreaded pred?

thanks

I messed up too.  I quit taking my asacol because I didn't have time to go to the pharmacy and then decided I would try to do without it for awhile since I wasn't having any problems.  Well,  I made it about a month with no problems and then each day last week I started having mild diarrhea and some abdominal pain.  And this past saturday I got hot and the joints in my legs started to ache. I learned my lesson and hope I don't go into a bad flare.

Sorry, I have no suggestions, just wanted to let you know other people mess up too.

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