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Should I have lowered my Asacol dosage

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Ulcerative Colitis
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Posted 7/9/2013 9:02 PM (GMT 0)
about a month ago I started taking half of the dosage the dr. recommended of Asacol. He has prescribed 4800 HD per day 3 morning 3 night. I cut the dose in half for several reasons. My question:

I am not feeling so good with lots of back pain and a flare on Father's Day. Is it important to remain on the dose he gave me? I don't think I really understand what the medication does. I was told it calms the colon. Well when I am not flaring is it still important to take the whole dose daily? I was diagnosed in October last year and still learning so much.

I am noticing a not so good feeling the passed few days with lots of right side back pain that wraps around to my front side. The right side was my most significant area of concern. My Dr. was concerned when first diagnosed that it may rupture. I have another Colonoscopy the 29th of this month.

Just wondering what the experience is out there with reducing meds or self medicating. Thanks for any help.
Posted 7/9/2013 9:56 PM (GMT 0)
You should not reduce your dose unless you are in a solid remission, and even then most people recommend tapering down. I think all of us have tried this at one point or another, so don't feel like you're the only one.

The lowest therapeutic dose of Asacol is probably 2g/day, but your results may vary as they say.

It seems clear that you are suffering from increasing symptoms. The easiest thing for you to do is go back to your recommended dose.

I don't know that anyone has a complete understanding of how 5-ASA mediates inflammation in the gut, but "calms it down" might be a good enough way to describe it. Even in remission taking your 5-ASA appears to prevent a return of inflammation. There is no downside except to your wallet.
Posted 7/10/2013 1:22 AM (GMT 0)
This makes sense to me and I appreciate your input. Sometimes we "newbies" need to hear it from those that have already gone through the 7 stages of denial! : ) I have been sitting on a heating pad with horrible back pain since about 2 PM today. Feeling pretty bad today. Tylenol of course does nothing to help. The heat does however make it a little better. I did take the second dose today and will continue to do so. I haven't really been in solid remission since October. So maybe I was just being hopeful. It is expensive, however, I have been ordering through Canadian Drug Store as my monthly costs here in US is over 1000 a month. Through Canadian Drug Store it is no so bad at about 400 every 3 months. Just wondered if I really needed to take so much. I guess the answer for now is YES! Thanks so much.
Posted 7/10/2013 1:27 AM (GMT 0)
You're welcome.

I now take a generic of Colazal, but I did spend 10 years buying Pentasa at about $300/month. It hurts the wallet a lot!
Posted 7/10/2013 12:45 PM (GMT 0)
It's really not a good idea to lower your dosage unless you've been in a really stable remission for a while, and even then, you need to do it slowly so that you don't throw yourself back into a flare.
Posted 7/10/2013 1:11 PM (GMT 0)

prudentpeg said...
I don't think I really understand what the medication does. I was told it calms the colon.

The active ingredient in your asacol pills is a drug called Meslamine. Meslamine is an anti-inflammatory medication. With uc, your immune system is attacking your large intestine and that process causes inflammation in the lining of your intestine. The meslamine coats the large intestine, released slowly from the pills as they pass from the start to end of your large intestine. The release of medication is triggered by PH. Your inflammation is reduced by the meslamine and the dosage needs to be enough to keep things in check. If you are taking too little of that anti-inflammatory then the inflammation builds up over time and eventually will cause a flare up of your uc.

Meslamine treats a symptom of uc, inflammation of the large intestine. Other uc meds take your immune system down a couple notches (imuran, 6mp, remicade, and humira as examples) so not as much inflammation is created in the first place. Some people need both the anti-inflammatories and immune system drugs to keep our uc in check (myself included). Consider yourself lucky if you need only the asacol.

It's dangerous to reduce or stop taking any of your meds without the okay of your doctor. As you found out, you can go back into a uc flareup. During a flareup, your uc can spread upward, and increase in both extent and severity. Flares can be hard to fight, with each subsequent flareup getting harder than the prior ones to fight (needing stronger medication each time to bring you back). So, in short, if you have a medication regime that is working for you then stick with it. Take the meds religiously, whether you are feeling good or bad. Your uc is never going away, so you need to take medication for life; no getting around it.
Posted 7/10/2013 6:33 PM (GMT 0)
Hi..how much of your colon is affected? throughout or limited?

So, you're obviously flaring. You don't know why you're taking the med, and you lowered it yourself. you'll learn the whys of it all. Eventually experiencing will get you to the point of "self-medicating"...but that should be with the rectals, not the orals.

So, with that said....You should also be on a rectal mesalamine. It's possible you don't need the full dosage of 4800mg daily, but it would be best to get back on the dosage and then discuss it with the doctor about why the dosage, why you cut the dosage and what you actually need to be fully covered med-wise.


Experience is the teacher, and discussing options with the doctor is how you'll get the best treatment for you.

q
Posted 7/10/2013 8:46 PM (GMT 0)
ipoop: Thank you that is the first comprehensive, sensible description I have read- and I have read a lot about the Meslamine and how/why it works. By reducing my dose I have allowed it to get a grip again, but I think I am catching it early. Back on the full dose and not stopping again. : ) learned my lesson. Came home today at 11 ish sat on the heating pad for a little while then laid down. Both helped. I do take vitamins daily, and Keifer water several times a day. Also milk keifer, tumeric tea and other natural goodies regularly buy not daily. I guess I thought the medicine wasn't doing anything- I must still occasionally phase in and out of denial. : ) I am so grateful for this forum. Thank you xx
Posted 7/10/2013 8:53 PM (GMT 0)
Quincy:

I have been told I am stubborn....perhaps it is true! : ) Right side colon severely ulcerated when diagnosed in October. Each time I have had a check up the Doc never fails to tell me how awful it was. I was very sick for two and half months. Several visits to Urgent care for dehydration. Then hospital for a week. I will talk to my GI on the 29th when I have my next scope/biopsies and I will continue to learn through the forum. Thank you for the reply. They all help put this into context and make it real.
I see a lot here about the rectal mesalamine how does it work and why is it used?
Thanks again very much. xx
Posted 7/10/2013 9:05 PM (GMT 0)
"I see a lot here about the rectal mesalamine how does it work and why is it used?"

hey pp - welcome :-)

1> it's an auntie inflammatory for your butt -

2> it makes your butt happy ;-)

Posted 7/11/2013 12:18 AM (GMT 0)
soystud: LOL, thanks needed the laugh. Will ask my doc about it on the 29th!
Posted 7/11/2013 4:09 AM (GMT 0)
Since you mention right sided...keep in mind that would be all the way including/from the rectum. Pretty much it sums up to U. pancolitis?

q
Posted 7/11/2013 3:30 PM (GMT 0)
I have not been told this Quincy and now come to think of it, i didn't see the scope report at the hospital, just the drs verbal report to myself and husband. I will get a copy of it. Does the U. you wrote stand for Ulcerative?

Thanks, PP
Posted 7/11/2013 4:06 PM (GMT 0)
QUINCY: I called my Drs office and had the nurse tell me what the scope report said.

It was Fulminant entire right side entire colon affected left and up focal visual colitis???

I looked up Fulminant- wasn't pleasant reading but that is exactly how sick I was when hospitalized. I guess I would not have been self medicating had I realized this. Ugh. No more. Will follow drs orders and hope for a good outcome on my 29th scope. Will def get my reports from now on.

Post Edited (prudentpeg) : 7/11/2013 10:16:23 AM (GMT-6)

Posted 7/11/2013 5:24 PM (GMT 0)
I am on 7 weeks post bad flare infection from not taking my asacol as prescribed. I tried to go med free with only vitamin e enemas. I have not idea what I was thinking because it all ended very badly and of course alot of pain and suffering. I have been on max dose for about 7 weeks now but the other day my wife decided that we should try the trader joes version of breaded italian eggplant (I usually make my own fresh with my own ingredients.) Well the next day my back started hurting and my stools got funny and was having 3 a day. It has been 3 days and I am finally not having difficulty getting out of a chair from the lower left ciatica pain that was coming from my colon. Needless to say no matter how careful you are it seems something always slips by and you are like oh f...!

I guess what I am trying to say is that you should stay on your meds as prescribed and if you think you can wean off of them I would only do it after a diuscussion from your doc so he or she knows. I been on my meds and somthing in the way of powdered garlic and powdered onion that kills me literally. I wasnt aware of it doing that much to me but I must be far from being healed if that is the case. I was feeling perfectly fine up until the day before eating it. I am now back to 1 movement a day with no b at all. What would of happened if I wasn't on my asacol? I dont want to know.

Good luck and rememeber you pay your doc alot so at least be straight up with him or her. They need to know what you are thinking and maybe you can work out a plan down the road to see if you can wean to a lower dose. All of this under their supervision.

My recommendation.

Post Edited (twiggs) : 7/11/2013 11:27:30 AM (GMT-6)

Posted 7/11/2013 9:43 PM (GMT 0)
Twiggs: thank you. I will not try to second guess the dr. any longer. I have had terrible back pain and nausea, and just feeling B.A.D. since Sunday afternoon. I realize I have let the inflammation build back up. fortunately I guess? only one movement a day, but maybe that means I am slightly constipated...so much to learn. I am glad you are on the mend and that your taking your medication as well.

Take care and thank you again for your reply. I learn from each one.

xx Peg
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