no meds

I know this is not a very smart thing to do, but for a while now, I have not been taking any meds...After I finally got off the prednisone, with the help of three remicade treatments ( I know, many people really object to starting and then stopping remicade), I kept forgettting to take my asacol...I was supposed to be taking 4 three times a day, but after my symptoms left, I kept forgetting to take it...I might get lucky and remember to take it during the afternoon, but thats about it...I was doing fine and am currently still doing fine, so I just quit taking it...No symptoms at all...I mean, none!!! I know, many of you are going to tell me how stupid that is, but has anyone ever stopped taking the meds and never had to take them again? I feel completely normal...I had mentioned to my dr. last time I saw him, that I was having trouble remember my asacol, and he told me about lialda, but didn't want to change anything since I had finally reached remission...Am I going to be in for a big surprise one day when it all comes back??? I wonder how long I can go without the symptoms coming back taking no meds??? Will it be worse next time? I know it's probably silly to think I will never have to take any more meds, but right now, it's so hard for me to think I will need more one day...I've been fine for many many weeks now...

Quincy, thanks for your response...I had three remicade infusions and that is it...Not having any more...I know there are several people on here that has said that is not a wise thing to do, but my Dr. recommended it...He recommended three infusions and none after that...I've read mixed feelings on that...So far it has worked for me...I have also read, once you take remicade and then stop, if it was to ever come to the point of needing it again, it wouldn't work...I don't know, I trust my Dr. considerably and I think he tries to do whats best for me...But, I will keep a close eye on symptoms...I am supposed to go back to my dr. this month...I'm not sure how he will react to me stopping my meds, but.......

bk1579 said...
I know this is not a very smart thing to do, but for a while now, I have not been taking any meds...After I finally got off the prednisone, with the help of three remicade treatments ( I know, many people really object to starting and then stopping remicade), I kept forgettting to take my asacol...I was supposed to be taking 4 three times a day, but after my symptoms left, I kept forgetting to take it...I might get lucky and remember to take it during the afternoon, but thats about it...I was doing fine and am currently still doing fine, so I just quit taking it...No symptoms at all...I mean, none!!! I know, many of you are going to tell me how stupid that is, but has anyone ever stopped taking the meds and never had to take them again? I feel completely normal...I had mentioned to my dr. last time I saw him, that I was having trouble remember my asacol, and he told me about lialda, but didn't want to change anything since I had finally reached remission...Am I going to be in for a big surprise one day when it all comes back??? I wonder how long I can go without the symptoms coming back taking no meds??? Will it be worse next time? I know it's probably silly to think I will never have to take any more meds, but right now, it's so hard for me to think I will need more one day...I've been fine for many many weeks now...

good post.

I've currently came off Prednisone and still have been taking Asacol. (3) 400mg pills in two divided doses. My dr. told me after I was off the Pred that he'd like to see me increase the Asacol to (8) pills total daily. Well smart or not I've stayed at (6) since getting off the Pred. My ultimate goal would be to get off the Asacol as well and just take a Probiotic and other supplements. I've considered myself coming off the Asa against my dr's will. I hate to do that since he is the doc but it's my body that we're feeding drugs to. I can understand if signs of a flare or other issues come up, but while I'm feeling good and not noticing any issues I'd rather not take the medicines daily. I completely understand this is a disease that will NEVER go away but I DO BELIEVE one can go without daily medication to prolong remission.
Just my thoughts and I personally am happy that you're doing well without the medication. That is my goal but I just need to get brave enough to try it

You say that you don't believe stopping meds had anything to do with three flares. Is that belief just that, merely a belief, or is it based on something concrete? We can all believe what we want to believe; doesn't make it true.

Also, I'm curious, Jeff, are you saying that you've only had this illness for about 1-3/4 years and you've already had three flares? May I be bold enough to propose that you just may want to be as concerned (or even MORE concerned) about the inflammation and damage to the mucosa of your large intestine from repeated flares as you appear to be about taking medication. It seems to me that if you are having "only" three flares in 20 month's time, and depending upon how long you flare before you actually see physical evidence of a flare and how long your flares last before you get them under control, you indeed may have spent the last 1-3/4 years with quite a bit of damaging inflammation going on in your gut, even if you felt you were in remission during much of that time.

What if you'd decided to stay on your meds for the past 20 months and had no flares, just 20 healthy months, where, other than taking your meds, you really didn't have to think about this illness at all? Maybe it's time for you to give it a try and see if you can avoid flares altogether?


Just another perspective to consider. Not meant to be critical. Everyone has to decide what works for them.

Mitz