how many in remission still take maintenance meds?

I've been in remission since mid-March and lately have only been using a Rowasa enema once a week.  (Still taking 2 Lialda nightly).

Do those of you who've been in remission for 6+ months still take maintenance meds? 

On imuran for 5 months stopped for i week, daughter wrote off my truck ( stressed me out) back on imuram & prednisone. There must be a connection.

I still take my pills and will continue until better studies show otherwise.I am near 6 months. There are a bunch of issues here:

1) what remission is. This is talked about over and over on this board. I am pretty much in cynical remission(no real symptoms) but I have no idea if I am in histologic remission(no biopsy evidence of inflammation). I can't afford regular coloscopies to check this so I assume I am not in histologic remission.

2) there is support for taking the drugs for preventing relapse at least for 2 years after reaching remission. After that not as much. You are twice as likely to stay in remission for the first year taking 5ASAs but this decreases with time. But what is the risk of taking low dose 5asa? probably not much for most people. $$$ though

www.ncbi.nlm.nih.gov/pubmed/10102971



3)Cancer. Studies point to major reduction in risk of colon cancer for those that stay on 5ASA. One study said a 75% reduction.

Probiotics and other non-traditional treatments work as well as 5ASAs to maintain remission in some studies but those studies are up to the same standards as those for 5asa. I take probiotics because I feel they have really no health risk and a good chance of reward. Little evidence that combining their use with 5ASAs is additive( or subtractive) to staying in remission but I will take my chances. I think if I lost my crappy health coverage I might choose probiotics over drugs but I don't have to make that choice.

I really wish that some good long term studies were being done so we could get good answers.

I've been in solid remission for 3 months and have no plans to go off my Asacol or Rowasa.  I am in the process of tapering the Rowasa (very slowly this time, learned the hard way) but I do not plan to go completely off it unless it just completely stops working for me.

Whenever I try to decrease or stop meds I quickly have symptoms return. I guess it is different for everyone but right now, for me, I don't see myself getting off medication. Maybe some day but seems doubtful. All I can do is dream...

The short answer is that I don't take maintenance drugs at all since they never worked for me, BUT I will continue to take supplements, herbs and probiotics probably for the rest of my life. I do not know if I need them to continue remission and I don't intend to find out. They couldn't hurt. I have always taken tons of supplements all my life so it is no problem to add a few more that are proven effective for IBD.

AND I will continue to watch my diet. The official SCD diet did not work for me. I notice the beginnings of a flare if I eat certain foods for even one day whether or not that that food is legal under SCD. And there are other foods that are considered illegal under SCD that do not give me any problems at all. There is no doubt in my mind that if I let myself indulge in my personal no-no junk foods for a week or so that I will soon be back to flarestown.

 

  I feel like the oddball here but when I went into my last severe flare my doctor took me off Asacol and put me on 6-mp and pred. I tapered off the pred after 3 months and have only been on the 6-mp since. I've responded remarkably well to the 6-mp and have been in remission for 6 1/2 years. The doctor told me since the Asocal "failed"me it would do me no good to be on it even tho prior to the last flare (which put me in the hospital) I had been fairly symptom free for 2 years. This is just what worked for me. If you doc says stay on them then do. Good luck! 

I have no desire to get off my meds, they keep me feeling like a human being and away from the dreaded corticosteriods.

I've been in remission (pred free and no symptoms) since April. I'm currently on azathioprine and Lialda to manage my condition...the Lialda wasn't helping on its own even at max dose. Im doing well on the aza with no side effects and more importantly NO SYMPTOMS. I don't have the time to deal with the effects if dropping my dosage sends me into a flare.

I stayed on asacol for more than 20 years, my GI said my scope showed that it probably helped because it kept the part of the colon that pills would reach healthier.

Now that I'm taking Remicade I don't take it anymore.

I had gotten pretty comfortable after a couple of years in remission and a clean scope. I decided to go ahead & reduce my maintenance dose of Asacol down to 4 pills daily. My doc told me that it was a bad idea to go that low, but I had hopes of being med free and decided to do it anyway. I did alright with if for a few months. Then, when I missed a couple of doses combined with some bad food choices... I ended up in a severe flare and hospital stay. My first flare was pretty bad, but I didn't realize how deep the rabbit hole really goes until the 2nd one. Now I'm stuck on a bunch more drugs which I will take regularly from now on!!!

Experience has shown that I have to stay on maintenance medication because I go into a flare within 3 weeks of stopping it. During my last flare in 3/2009 I got worse after adding generic Rowasa, a med that had consistently helped me for 14 years previously (both brandname & generic). That reinforced my conception of UC as a lifelong, still-mysterious ailment which must always be taken seriously. A UCer can feel fine one day but then turn sick as blazes the next. Not all of us will go thru the exact same changes during our lifetimes; we had best beware, though, that the possibility of recurrence always exists & helpful meds can stop working. It's the nature of the beast we're dealing with. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal-- the generic made me sick!)

I have never been off meds and I was diagnosed in 1961 when I had just turned 16. I was told the effectiveness of the meds decreases when one quits them. My flares have been fewer and far between and I do decrease the aszulfadine a little (go from six to four tablets daily).

I enjoyed a very long remission without meds. But, once I flared again, it was worse than it ever was. Much harder to get back into remission. That scared me enough that I will now stay on a maintenance dose. I have slacked, I'm supposed to take 2 tab 3x a day, but 90 percent of the time, I only take 2 tabs 2x a day.