Can I stay on asacol forever?

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bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/7/2008 11:40 AM (GMT -7)   
Hi everyone,  I was just wondering....I am on asacol and it is working like a charm.  I have read different peoples situations.  It seems like when people go off of meds, it (UC symptoms)sometimes comes back worse and then their medicine that worked before doesn't.  Then they have to try prednisone.....which I am afraid of.  Does anyone know if using asacol forever will cause a problem.  I remember asking my doctor if I would get immuned to it where it would stop working and I think he said no.  Are there any terrible side effects that anyone knows of that using asacol forever would cause?  If I had my choice, I'd stay on it forever because it is working.  What do you all think?  I appreciate any thoughts or advice.
Thanks,
Lori (Bellski)

Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 6/7/2008 11:46 AM (GMT -7)   
I think everyone is different when it comes to the possibility of it stop working for them. Some people have been on it for years and then it stop working. I was on it for 12 years when I had to switch to Colazal because I became intolerant of mesalamines. But others have been on it almost forever with no troubles whatsoever. I say that if it's working for you, do NOT get off it. Because if you do, you may end up flaring again and like you said, it can take longer then to get a flare under control.
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bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/7/2008 11:50 AM (GMT -7)   
Thank you so much Red. I appreciate the advice!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/7/2008 11:52 AM (GMT -7)   
How many are you on daily?

I've used only 5ASA meds (asacol and retention enemas) for over 19 years.
I intend to stay on them until I can't.

I have the appropriate blood tests done, etc.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/7/2008 12:04 PM (GMT -7)   
It doesn't seem to do a whole lot for me.  But I keep taking it. . . .
 
There's an older study that seems to have produced the rule of thumb that after two years' remission there is no real difference in outcome between people who continue to take asacol and those who stop taking it. 
 
However, with its low side effects, many people feel the risk of discontinuing the medication after prolonged remission isn't worth possibility that they don't need it.

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/7/2008 12:04 PM (GMT -7)   
Qunincy, What are the blood tests? Do you think I need blood tests? My doctor never mentioned them. I take 6 pills a day. 2 at breakfast, 2 at lunch and 2 at dinner......The asacol pills are 400mg each. I sometimes use canasa suppositiries but the doc says I don't need them right now. Other than that just Cymbalta for anxiety control (20mg) and daily vitamin and calcium. I'd like to look into probiotic soon too. Let me know what you think about the blood test. Thanks, Lori (Bellski)

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/7/2008 12:06 PM (GMT -7)   
Thanks seconder, Does remission basically mean your symptoms are not present? If so, I guess I'm in remission. My doctor never ussed that word though.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/7/2008 2:35 PM (GMT -7)   
bellski, my GI told me that Asacol has been shown to reduce the risk of colon cancer and most GIs say to stay on some type of 5ASA's even when in remission, so definitely stay on it!
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis) 3 pills/day, 1 Florastor/day
1 DanActive/day


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/7/2008 6:21 PM (GMT -7)   
Thanks for the advice, I will stay on it.
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 6/7/2008 6:33 PM (GMT -7)   
I take 12 a day right now.  I have been through my doubts w/ asacol - thought it did nothing...but I think it helps a little.  I do pass the pill shells in my stool, and sometimes it gives me diahrea...  I have no side effects, and have medical coverage so I continue to take them.  I also have to have blood work done occasionally because of the dosage I am on.

33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 6/7/2008 6:34 PM (GMT -7)   
Definitely stay on 5-ASA for maintenance of remission. That's the current recommendation of gastroenterologists who subspecialize in IBD treatment. You might find better vitamin supplementation with Centrum or Forvia, though. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/7/2008 10:55 PM (GMT -7)   
seconder said...
It doesn't seem to do a whole lot for me.  But I keep taking it. . . .
 
There's an older study that seems to have produced the rule of thumb that after two years' remission there is no real difference in outcome between people who continue to take asacol and those who stop taking it. 
 
However, with its low side effects, many people feel the risk of discontinuing the medication after prolonged remission isn't worth possibility that they don't need it.
To me, the study is severely flawed since UC is rarely a one-only event.
 
Two years remission would be awesome....but remission is subjective regarding patients and doctors.
 
There are maintenance dosages and treatment dosages.
 
Many doctors seem to completely ignore the need for rectal meds...therefore, retaining a patient on high oral 5ASA meds which can sometimes produce symptoms such as gastro discomfort and loose stool/diarrhea (and may be assumed to be a flare, but an adjustment to taper the med can sometimes lessen the symptoms).
 
quincy
 


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 6/8/2008 12:01:17 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/7/2008 10:57 PM (GMT -7)   
Bellski....the blood tests would be for liver and for kidney. You mean you have had NO blood tests at all..ever...by your GI?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/8/2008 6:22 AM (GMT -7)   
I don't know how to grab a quote here, but I am responding to Quincy who is responding to me.
 
Many studies for UC are questionable if you ask me.  Compared to other diseases it just doesn't merit the attention, so if someone asks about life-long Asacol use, there's an old study that shows no difference in outcome between people who take the drug and those that don't after two years' remission. 
 
On the other hand, Procter and Gamble is happy to tell you that Asacol is safe forever because of a six-month study. . . .
 
Who do you believe???
 
You have to do your own research, turn on your own light switches, talk to knowledgeable people, and then, ultimately, make your own decisions.  (There's a lot of hostility to that idea, for some reason.)
 
As remission goes, I would say the standard proposed by this particular study may be difficult to attain.  If I remember correctly, patients had no symptoms, and the colon appeared completely normal, and there were no cellular defects.  Apparently, these patients are at a low risk of relapse.  How many people qualify?  Who knows? 
 
Doctors ignore rectal meds because rectal meds seem better received after a patient has already tried other meds.  Compliance with rectal meds, especially in the beginning, especially among young people, is very, very low.
 
And, Bellski, please understand that nothing I have written takes the place of your own research. 

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/8/2008 6:57 AM (GMT -7)   
Thank you so much.
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/8/2008 12:11 PM (GMT -7)   
bellski....The lowest possible dosage for the longest period of time should be the goal. It can be increased as needed and decreased to a maintenance dosage. It takes a while to find the dosage...symptoms and understanding of the symptoms usually dictate. Of course, life happens along the way...

----

seconder....My last c-scope was perfect with slight inflammation 2 inches at the rectum (which could have even been from the clean-out)....and I do credit much of it to the consistent use of my meds over a 19+ year period.
I also have PSC, and I believe that keeping UC symptoms quiet helps keep the PSC quiet as well.

Now, in saying all that....I am able to use salicylates including aspirin....not all UCers are.

regarding the compliance....many doctors/patients want a quick result. Pred is one of the quickest initially until tapering off or till the next flare...which to me already sets the patient up for a perceived quick fix and eventual failure to use of other meds. Don't know if it warrants any truth, however because it's based on my own observation. One doctor I saw as a replacement for one appointment said that if I were his patient he would have put me on pred first-thing. I told him I'm relieved he wasn't my doctor (that was the first year of diagnosis). I shudder to think how I would have been in his care.

It's defintitely hit and miss with treatments..and there are some patients who don't need meds between flares. But I think if the first-line meds work (oral and rectal), we have nothing to lose. Close monitoring regarding liver/kidney functions are a must...but it's still a better price to pay than the alternatives.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 6/9/2008 2:32:13 AM (GMT-6)


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/8/2008 12:30 PM (GMT -7)   
Thanks Quincy, I am glad my doctor didn't start with pred too. I'm slowly but surely getting educated, much thanks to this website. Just curious, what is PSC? I know this may sound silly but I am hoping never to have a flare. It may be wishful thinking but I am hoping for that. I appeciate the response to my questions, I know I have a lot sometimes. Take Care, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/9/2008 1:56 AM (GMT -7)   
Hi bellski....I'm posting some sites for you to peruse (on PSC)
 
 
 
 
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/9/2008 8:39 AM (GMT -7)   
Thanks Quincy, I browsed through the articles. Wow, I am sorry that you have that too. You seem like you are taking good care of yourself and it is working pretty well. I will ask my doctor in the near future about blood tests. Thanks again, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/9/2008 12:21 PM (GMT -7)   
Mine is in very early stages....so far no problems, thankfully.
I did refuse the ERCP since I read it can actually trigger the disease into an active state. I'd like to think that the decision to not do so has contributed to how I'm feeling today. Thankfully, the MRCP (MRI) for diagnosis came about...

Be well,
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 6/9/2008 3:41 PM (GMT -7)   
bellski,

I was on Asacol from late 1988 until earlier this year with no side effects that I was ever aware of.
I started on it as a participant in an investigational study for FDA approval of Asacol and was glad to switch from sulfasalazine. The sulfasalazine caused a lower sperm count and kept my wife and I from having our third child for several years. The only reason I stopped taking the Asacol was because after almost 3 decades of UC, which started in my mid 20's, I ended up having my colon removed last September because of high grade dysplasia showing up in a biopsy from my colonoscopy in May, 2007.
Cancer was found in a biopsy after the colon was removed, but it was very small and did not appear to have spread. I now take Pentasa and my GI doc told me it is designed to dissolve in the ileum so it should treat the remaining rectum. In my surgery, they re-attached the end of the small intestine to the top of the rectum. The Asacol pills didn't appear to be dissolving after my surgery, as they showed up in the toilet.
I also agree with others who encouraged you to continue taking the Asacol even after remission. I think the risk for cancer is greater with long-term active colitis symptoms. I wish you the best.
53 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Multivitamin
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-sigmoid anastomosis 9/5/2007


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/9/2008 4:31 PM (GMT -7)   
Thanks ucRick, I appreciate it. I wish you the best too.
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/10/2008 8:18 AM (GMT -7)   
Yeah, that makes a lot of sense, Quincy, and it's hard not to trust your own experience and observation.  5ASAs have a really good profile, and if you aren't effected by the side effects, I can't think of any reason not to take them. 
 
At any rate, another way of looking at that older study is that, in the case of someone with two-years' complete remission, a flare will occur whether that person takes Asacol or not.
 
And, yes, I completely agree with you.  People really want a quick fix.  It's understandable.  I often do myself and reminding myself to be patient is sometimes difficult.

Bionic B
Regular Member


Date Joined Apr 2008
Total Posts : 42
   Posted 6/10/2008 10:30 AM (GMT -7)   
my doctor told me that it looks as if i might have to be on the asacol for the rest of my life.  i have however, started taking the supossitories and am supposed to finish it in august (6 month course) i am not sure whether suppositories may be taken for very, very long periods though....will have to consult with him once he evaluates me again.  i do feel that the asacol doesnt always work for me and then i have to take prednisone with it as well.  i took a ten day course now recently, but i dont know, there werent much improvement....think its stress related though....

bIaNcAcHaRlEnE aGe 29
DiAgNoSeD sEpTeMbEr 2006
AsAcOl TaBlEts 2x DaIlY
aSaCoL sUpPoSiToRiEs 2x dAiLy
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 6/10/2008 12:50 PM (GMT -7)   
Seconder...I'm not without flares, but I've NEVER been as bad as I was when diagnosed.

There is a LOT to say about keeping inflammation to a minimum...that's really the point of using maintenance meds.

Consider that UC starts at the rectum....how in the world would Asacol prevent that inflammation? If patients don't learn to recognise early symptoms of rectal inflammation (and one of them could be constipation)...they'll wait until it gets to the point of what THEY deem to be a flare. Hey, some docs don't take some patients seriously until they bleed!
What's with that???

It has its place....but many patients don't understand the long-term benefits ultimately when looking forward, but can when looking back.

Now....THAT'S true HIND-SIGHT!!!

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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