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bk1579
Regular Member


Date Joined Sep 2007
Total Posts : 100
   Posted 1/1/2008 2:37 PM (GMT -7)   
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...
28 Yrs old
Dx UC 3/07
4 Asacol 3x/day (when I remember to take them)
5mg Prednisone
Remicade (only had three infusions)
Fish Oil supplements
Multi-vitamine
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29856
   Posted 1/1/2008 3:19 PM (GMT -7)   
I would love to think you'll be fine for a long while...and that's definitely possible, for it happens. There are a few who have been on her with no meds.

You might be able to continue without the Asacol until you start to notice some symptoms, and I do suggest you to not ignore them.

Use it as an experiment....you'll never know unless you try. I did it on the encouragement of my doctor. We learned it's not for me.

Clearly you have no symptoms .... but that doesn't necessarily mean you have no inflammation happening. Some of us don't match internal inflammation/noninflammation...meaning some of us have lots of discomfort/cramps, etc and have no minimal inflammation. Some of us can have no symptoms of discomfort but minimal flare symptoms, etc and have lots of inflammation.

Wait and see....but PLEASE ENJOY FEELING WELL!!!

When's your next Remicade?

I would suggest you make sure that when you have any symptoms to please ask the doc for rectal meds as well as the Asacol....start on a lower dosage of maybe 6 daily in a two divided dosage (or the Lialda once a day).

Happy New Year!
quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~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 ....bromelain 1 - 2x 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 !!!


bk1579
Regular Member


Date Joined Sep 2007
Total Posts : 100
   Posted 1/1/2008 4:49 PM (GMT -7)   
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.......
28 Yrs old
Dx UC 3/07
4 Asacol 3x/day (when I remember to take them)
5mg Prednisone
Remicade (only had three infusions)
Fish Oil supplements
Multi-vitamine
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29856
   Posted 1/1/2008 9:22 PM (GMT -7)   
Hey, who's to say that doing Remicade for a short stint won't help?.....maybe for some doing it continually isn't the best thing? For some it is, for some maybe not.   It's still a new medication for UC, and your doc's suggestion for usage might me what you need.  He is, however, thinking you're on the 5ASA meds.  I don't believe you've experimented with them enough yet...both oral and rectal.  That might have to be a continual and the Remi for the "kick butt" meds.
 
Try not to be too defensive with your doc, discuss it and offer options of treatment and ask his opinion of it.

I have a friend who has fistulising Crohn's . She doesn't go for continual Remi .... just on an as needed basis....but she does tend to wait tooo long in my perspective once she has symptoms.

You have to perfect the fine juggling act with meds and not wait too long see if you need them....for it's easy to justify and ignore early symptoms.

Regarding 5ASA meds....there is also a strong theory/belief in the gastro community that they do help protect the colon from cancer...so, if you can use them, but even at a lower dosage to start and then increase if needed, it might be a good thing in the long-run.
Especially if you have continual simmering inflammation.
 
Food for thought...just know what you're dealing with and know what you have available to add to/throw at the mix.
 
Continue to feel well and keep us posted.
quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~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 ....bromelain 1 - 2x 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) : 1/1/2008 9:31:19 PM (GMT-7)


icanrace
Regular Member


Date Joined Sep 2007
Total Posts : 221
   Posted 1/2/2008 8:35 AM (GMT -7)   
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 yeah
started Prednisone & Asacol on Thursday 10-4-2007

currently OFF Prednisone


Polarisjeff
Regular Member


Date Joined Jan 2006
Total Posts : 74
   Posted 1/2/2008 9:38 AM (GMT -7)   
Yes, when I reach remission I taper to no meds eventually. I stay on probiotics, fish oil and other supplements, but that's it. I've had 3 flares, but I don't believe stopping meds had anything to do with recurrence.
Diagnosed with Ulcerative Proctitis April 2006

Canasa suppositories daily
Hydrocortisone enemas nightly

Probiotics, fish oil, iodine, Bio-D-mulsion, Ultra InFlamx, acupuncture,
massage, sea salt,

Status: 48 hour virus left me with mod to severe flare
12/4/07 - progressed to severe 12/28/07


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 1/2/2008 2:48 PM (GMT -7)   
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
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

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