Can I stay on asacol forever?

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.

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

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, 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!

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.

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

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....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

Hi bellski....I'm posting some sites for you to peruse (on PSC)

http://www.emedicine.com/PED/topic1895.htm

http://www.wrongdiagnosis.com/p/primary_sclerosing_cholangitis/intro.htm

q

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

Thanks ucRick, I appreciate it. I wish you the best too.

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....