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coming off Asacol questions

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Ulcerative Colitis
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Posted 12/11/2007 12:24 AM (GMT 0)
Has anyone taken themselves off Asacol or lowered the dose on their own?

Do you need to taper this drug like Pred?

I know, I know, I should only ask my dr but I want to know your guys' experiance too.

ty
Posted 12/11/2007 1:39 AM (GMT 0)
I lower and raise my Colazal based on how I am doing. I suggest if you taper to drop 1 pill every couple of weeks. Taking your time is key. Are you in remission? Why are you going off Asacol?
Posted 12/11/2007 1:42 AM (GMT 0)
I tapered from 12 a day to 8 a day, and I think I did it by maybe 2 pills per week. I felt much better after lowering my dose because I think I was taking too much and it was keeping me from as good a remission as I can get from Remicade.
My GI didn't say I needed to taper, but then again I didn't ask. So upon the advice of folks here I tapered :-)
Why are you reducing your asacol?
James
Posted 12/11/2007 1:51 AM (GMT 0)
Just remember that you need to take at least 6 pills a day, any less than that and you will not be getting the proper effects of the drugs.  Last time I fooled around with my Asacol dosing, I ended up with a one inch deep ulcer.  I really reccommend that you do this under a doctor's supervision.  I have tried to medicate or un-medicate myself many times, all resulting in horrible results!
Posted 12/11/2007 2:02 AM (GMT 0)
well I'll be honest, I'm a pretty stubborn person. I'm one that likes to learn from my mistakes not necessarily others.
With that said, I'm not convinced I need to be on this stuff all the time. If I'm flaring 15-20 times to the bathroom every day with urgency, I'll take my meds. I've been doing good for some time now (or what I call doing good) and I'm ready to get off these meds. I've been on Pred for a little over 8 weeks and I'm down to 5mg starting yesterday. I've been tapering 5mg every 7 days for about the past 4 weeks or so. So far so good even though Ive had my times of feeling like crap.
One more week and I'm off that stuff unless I flare horribly and have no other alternatives.
The Asacol is next and then its going to be the natural approach for a while.
Just my 2 cents...............
Posted 12/11/2007 2:33 AM (GMT 0)
I hope it works for you, I had asked my GI about getting completely off of Asacol and he didn't think I should. Apparently it also helps prevent colon cancer.
Posted 12/11/2007 3:17 AM (GMT 0)
I recently asked my Dr if I could lower my daily dosage of asacol and she said give it 6 months first.
Good luck!
Posted 12/11/2007 5:35 AM (GMT 0)
My doctor said he likes to keep his patients on their full dose of Asacol (whatever it took to get into remission) for at least a year, before trying to taper. I see him again in March, and hopefully he'll say it's okay for me to taper down to 8/day. And, yes, it is supposed to help prevent colon cancer. Be careful and good luck.
Posted 12/11/2007 7:50 AM (GMT 0)
If you're tapering the asacol...I'd suggest you wait until you're off the pred.

If you're tapering pred...you'll have some relapse of symptoms...probably.

If you're tapering the pred AND asacol...don't do them at the same time..meaning don't lower the asacol on Monday and then lower the pred the same day. Figure in where it's not at the same time. Trial and error I guess....

When you taper the pred, you can to the alternating method so that it kind of kick starts the adrenal glands into producing the cortisol....like 5, 2.5, 5, 2.5...etc till 2.5, 2.5, 2.5.....etc.

If you're wanting to try the above method, then maybe do the asacol taper one pill every month or every 2 weeks.

I strongly....STRONGLY....suggest you do rectal 5ASA retention enemas to make sure the rectum (which is the first to inflame and the last to heal) stays less inflamed during your tapering method.

I tapered off asacol...and the enemas.....eventually realised it's just much easier to maintain by increasing and tapering the rectal meds and continue with the 6 asacol daily.

Your experience is the best teacher anyway....but do make your learning experience at least as wisely as you can. Common sense goes a long way and it'll lessen the frustration.

keep us posted as to how you're doing.
quincy
Posted 12/11/2007 11:59 AM (GMT 0)
everyone, thanks for the input. I will keep you posted.
The only thing going on right now that I should note is my head feels really right and like its about to explode. But I think I'm also fighting a head cold at this time too.
I have been sore at times too but then again I lift heavy weights 5-6 days a week too. Not sure if its because of the taper but I'm going to keep rolling.
Posted 12/11/2007 5:04 PM (GMT 0)
my experiences w/Asacol

1. When I was feeling good I did not always take all my meds, I did have a period of about 6 months that I was med free then started flaring and started taking my pills again.

2. Sometimes I would forget to take all my pills for a long time and then flare and take my pills and be fine

3. I was coming out of a flare and had to stop taking Asacol cold turkey b/c of my kidney and I went into a horrible flare that I was going 25+ times a day D,B cramping, anemic etc. all the joys of flaring.

My two cents is if you are flaring then I wouldn't stop the asacol (unless you have to) and if you are not flaring I would taper it to come off of it, I would recommend not going cold turkey. If I had it to do over again and knew then what I know now, I would have tapered the asacol and done some other things differently.

Stay well!
Posted 12/11/2007 5:22 PM (GMT 0)
I cna't help but throw this is- the reason you are doing SO good right now is BECAUSE of the MEDS!!!!!  So many people on here have stopped their meds on their own & gone straight into horrible flares, myself included. Asacol has been in use for a loooong time, with very little side effects. And that's with long-term use. You have to think of it like a diabetic- if you needed to take insulin daily for the rest of your life, you would. It's really no different. I was on Asacol alone for years, doing great... stopped it on my own, used the enemas daily, wound up in a 2 year flare nearly resulting in surgery. Now I'm on serious heavy-hitter meds, & I don't kid myself- there is probably no chance in he** I'll be off them anytime soon. You have to realize that by going off a relatively mild, safe med, you may wind up on ones that are much worse.

Posted 12/11/2007 5:25 PM (GMT 0)

Eva Lou said...
I cna't help but throw this is- the reason you are doing SO good right now is BECAUSE of the MEDS!!!!!  So many people on here have stopped their meds on their own & gone straight into horrible flares, myself included. Asacol has been in use for a loooong time, with very little side effects. And that's with long-term use. You have to think of it like a diabetic- if you needed to take insulin daily for the rest of your life, you would. It's really no different. I was on Asacol alone for years, doing great... stopped it on my own, used the enemas daily, wound up in a 2 year flare nearly resulting in surgery. Now I'm on serious heavy-hitter meds, & I don't kid myself- there is probably no chance in he** I'll be off them anytime soon. You have to realize that by going off a relatively mild, safe med, you may wind up on ones that are much worse.


I agree 100%!  Been, there, done that, I DON'T recommend it!
Posted 12/11/2007 5:45 PM (GMT 0)
thanks for the nod, princesscolon! I noticed you're on the super-mega-dose of Remicade- me too! I was doing the smaller, "normal" dose initially- worked for a couple infusions, no more. Now I take 600mgs+ also.

Posted 12/11/2007 6:55 PM (GMT 0)

icanrace said...
everyone, thanks for the input. I will keep you posted.
The only thing going on right now that I should note is my head feels really right and like its about to explode. But I think I'm also fighting a head cold at this time too.
I have been sore at times too but then again I lift heavy weights 5-6 days a week too. Not sure if its because of the taper but I'm going to keep rolling.

I see a huge red flag....prednisone, UC, head about to explode and heavy weight lifting.  Just know that prednisone can weaken parts of your body...muscles, bones, blood vessels, occular pressure, ...etc.  It also increases fluid retention in the body...in areas that can cause more pressure.

 

Maybe lessen the weights so that you're not pushing your body/blood pressure to the limit while you're on prednisone.  To me, something can "give" and then what?

You knowing the "ropes" of physical training should have an alternative while you're taking pred...but....I'm certainly not an expert..just on the outside looking in.

quincy

 

Posted 12/12/2007 2:30 AM (GMT 0)
"I cna't help but throw this is- the reason you are doing SO good right now is BECAUSE of the MEDS!!!!! So many people on here have stopped their meds on their own & gone straight into horrible flares, myself included. Asacol has been in use for a loooong time, with very little side effects. And that's with long-term use. You have to think of it like a diabetic- if you needed to take insulin daily for the rest of your life, you would. It's really no different. I was on Asacol alone for years, doing great... stopped it on my own, used the enemas daily, wound up in a 2 year flare nearly resulting in surgery. Now I'm on serious heavy-hitter meds, & I don't kid myself- there is probably no chance in he** I'll be off them anytime soon. You have to realize that by going off a relatively mild, safe med, you may wind up on ones that are much worse."

I totally agree with this statement. I was cruising along great on my meds till i decided to taper down off them....and went into the most brutal flare. took me 7 months to get off the prednisone after that. its just not worth it. i would stay on those meds, and as quincy has advised use the rectal meds as well. i use 8 (4000 mg total) pills of salofalk a day. and im using a few enemas a week as well. i figure the side effects of these meds is so minute compared to the flares and/or the prednisone that i will continue this way. :)
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