Hi. Enough poetry for now - time to get serious for a sec. (don't worry, only a minute or two at the most!)
I was just reading the posts in the medication section, and Peggy touched on something that I have been fearing. I'm really, really tempted to try cutting back on my Asacol because while taking 2 pills three times a day, my CC is totally under control. Part of me says "if it ain't broken, don't fix it" but the other part of me says "why take more meds than you need?" But I have this fear that if I start fooling around with the meds and I need to go back on, will they still work for me????? Should I leave well enough alone and just take my pills and count my blessings? Why would it not work the second time around?????
Sue
Asacol question . . . Peggy?
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Hi Sue,
Peg's home computer died, and she has a new one ordered. I believe that she's off from work on Fridays until sometime in August, so she may not get to see your post until Monday, unless the new computer arrives tomorrow. Anyway, the point is, you may have to bump up this thread on Monday, so that she will notice it.
She can advise you much better than I can, on how far you might be able to go in reducing your dosage rate. I'm thinking that she was able to go down to a maintenance dose of only one or two pills a day, but I suggest you check that out with her. I think she's the resident expert on low-dosage medication rates.
Tex
Peg's home computer died, and she has a new one ordered. I believe that she's off from work on Fridays until sometime in August, so she may not get to see your post until Monday, unless the new computer arrives tomorrow. Anyway, the point is, you may have to bump up this thread on Monday, so that she will notice it.
She can advise you much better than I can, on how far you might be able to go in reducing your dosage rate. I'm thinking that she was able to go down to a maintenance dose of only one or two pills a day, but I suggest you check that out with her. I think she's the resident expert on low-dosage medication rates.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I am not Peg, Sue, but I have been sitting here pondering this question in regards to my own medications. I have tried to reduce my dosages and have found much to my dismay, that, while falling off the horse is easy, it is sometimes hard to climb back on.
In my own case, I have tended to leave things alone. My main priority is to feel as well as I can for as long as I can. If that means meds, so be it. I am 63 years old and I want to be an active Grandma for my grandsons. And now, my friend, Allen.
Just my 2 cents.
Love,
Sally
In my own case, I have tended to leave things alone. My main priority is to feel as well as I can for as long as I can. If that means meds, so be it. I am 63 years old and I want to be an active Grandma for my grandsons. And now, my friend, Allen.
Just my 2 cents.
Love,
Sally
Mitakuye oyasin
(Lakota for "We are all related")
(Lakota for "We are all related")
Hi, Sally.
Your "two cents" matches the 2 cents of the RN in my doc's office. I just called and spoke with her..... she wants me to leave well enough alone for now, but did remind me that I am WAY overdue for a follow-up visit with the digestive doc, and I have an appointment to do that 3 weeks from now. I'll talk to him about cutting back, but I'm tending to agree with you right now..... feeling good is a GOOD thing - why mess with it?
Sue
Your "two cents" matches the 2 cents of the RN in my doc's office. I just called and spoke with her..... she wants me to leave well enough alone for now, but did remind me that I am WAY overdue for a follow-up visit with the digestive doc, and I have an appointment to do that 3 weeks from now. I'll talk to him about cutting back, but I'm tending to agree with you right now..... feeling good is a GOOD thing - why mess with it?
Sue
Asacol
Hey - it's only Thursday...I'm here!!
I did take my dosage of Asacol down to one a day and wish I'd left it there. I, too, thought if I'm doing so well why do I even need to take it at all. In about a month and a half after dropping it I was right back to square one, all the symptoms came (dare I say it?) FLOODING back. I tried to reinstate the Asacol, up to ten a day, and I gave it MONTHS before I resigned myself to the fact that it would not work for me anymore, in fact it seemed to be making me queasy. It gave me my life back when I first started taking it and I was perplexed as to why it wouldn't work the second time around, but it did not.
I ended up having to take Entocort (steroid) for three months and that set me straight. I only took 6mg per day, and although I really didn't want to take a steroid, neither did I want to diet or put up with all the cwapping.
Currently I'm in remission and am not taking any drugs. I watch my diet only in that I avoid any foods that make me gassy. I try to get as much exercise as I can but I'm not very good about that in winter.
I wish you the best in whatever you decide. We all know how tricky this disease can be and that it doesn't affect us the same way. You could be fine without the Asacol, you might not be. I can only share my experience with you.
Love,
Peggy
I did take my dosage of Asacol down to one a day and wish I'd left it there. I, too, thought if I'm doing so well why do I even need to take it at all. In about a month and a half after dropping it I was right back to square one, all the symptoms came (dare I say it?) FLOODING back. I tried to reinstate the Asacol, up to ten a day, and I gave it MONTHS before I resigned myself to the fact that it would not work for me anymore, in fact it seemed to be making me queasy. It gave me my life back when I first started taking it and I was perplexed as to why it wouldn't work the second time around, but it did not.
I ended up having to take Entocort (steroid) for three months and that set me straight. I only took 6mg per day, and although I really didn't want to take a steroid, neither did I want to diet or put up with all the cwapping.
Currently I'm in remission and am not taking any drugs. I watch my diet only in that I avoid any foods that make me gassy. I try to get as much exercise as I can but I'm not very good about that in winter.
I wish you the best in whatever you decide. We all know how tricky this disease can be and that it doesn't affect us the same way. You could be fine without the Asacol, you might not be. I can only share my experience with you.
Love,
Peggy
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Joyce
- Little Blue Penguin
- Posts: 46
- Joined: Mon Jun 13, 2005 10:51 am
- Location: Garden Grove, California
Hi,
I take Colazal. It's like Asacol. I have been cutting down on mine. I was down to 2 in the morning and 1 at night for a long time. For about a month I cut it to 1 in the morning 1 at night. And just today I went back to 2 and 1. I noticed a difference in cutting it this time. I never had much with the cramps. But just in the past 2 weeks I have had bad cramps and the "D" is worse and I'm bloated!!!! My plan was to get down to 1 a day and then hopefully none. But it looks like I have to stay on them a while longer. I have a real hard time staying on the GF diet. Everyone is so different with this darn disease. But, I thought I would give you my 2 cents worth.
Love,
Joyce
I take Colazal. It's like Asacol. I have been cutting down on mine. I was down to 2 in the morning and 1 at night for a long time. For about a month I cut it to 1 in the morning 1 at night. And just today I went back to 2 and 1. I noticed a difference in cutting it this time. I never had much with the cramps. But just in the past 2 weeks I have had bad cramps and the "D" is worse and I'm bloated!!!! My plan was to get down to 1 a day and then hopefully none. But it looks like I have to stay on them a while longer. I have a real hard time staying on the GF diet. Everyone is so different with this darn disease. But, I thought I would give you my 2 cents worth.
Love,
Joyce
Hi Sue,
I have had a very unusual case, I have gone into remission for who knows what reason, and then it came back for who knows what reason. Its been really weird. But last year when it started up in the summer, the doctor put me on asacol, 3, 3 times a day. Within a few shorts weeks it was under control again. I was wondering too what would happen if I stopped it once I was under control, would I have the same result as Peg did, and since I take so many other pills, I wanted to try my luck. I have been pretty lucky with it too, I have been able to adjust my dosage as I go!!! So sometimes I take nothing, and other times I am on the full dosage. Right now, I am taking nothing, and doing fine, for how long I don't know, but I am okay with that. And I am not so good with changing my diet either, so this works for me, and so far so good. Everyone is different, I'm just glad that I can adjust the meds.
As long as I don't have to deal with running to the bathroom I am all for it. BUT................I agree with everyone on not rocking the boat,if what you are doing is working. For me it was mainly that I am taking about thirty-six pills a day, without the asacol, so to cut back was an option I wanted to try and see if I would be okay.
And that is my story and I'm sticking with it.
I know it makes no sense at all, but neither does this disease. And now I am going to go and have a nap. I did not sleep much last night and had to be at the doctors really early this morning, so I need to recharge myself. Hope I make some sense.
Gentle Hugs
Wendy
I have had a very unusual case, I have gone into remission for who knows what reason, and then it came back for who knows what reason. Its been really weird. But last year when it started up in the summer, the doctor put me on asacol, 3, 3 times a day. Within a few shorts weeks it was under control again. I was wondering too what would happen if I stopped it once I was under control, would I have the same result as Peg did, and since I take so many other pills, I wanted to try my luck. I have been pretty lucky with it too, I have been able to adjust my dosage as I go!!! So sometimes I take nothing, and other times I am on the full dosage. Right now, I am taking nothing, and doing fine, for how long I don't know, but I am okay with that. And I am not so good with changing my diet either, so this works for me, and so far so good. Everyone is different, I'm just glad that I can adjust the meds.
As long as I don't have to deal with running to the bathroom I am all for it. BUT................I agree with everyone on not rocking the boat,if what you are doing is working. For me it was mainly that I am taking about thirty-six pills a day, without the asacol, so to cut back was an option I wanted to try and see if I would be okay.
And that is my story and I'm sticking with it.
I know it makes no sense at all, but neither does this disease. And now I am going to go and have a nap. I did not sleep much last night and had to be at the doctors really early this morning, so I need to recharge myself. Hope I make some sense.
Gentle Hugs
Wendy
Alrighty then... I guess the message here is pretty much "whatever works for YOU - cause everyone is different". I have skipped my nighttime dose several times (not intentionally, just ended up falling asleep on the couch and not wanting to get up in the middle of the night to take them) and I can't tell if I noticed a difference or not. I'd probably say no, but then again, how long AFTER the skipped dose would I see the difference? The next day, or weeks later? I keep remembering that it took four weeks for the Asacol to start to work, so maybe it takes a long time to feel the affect of playing with the dose, too.
I'll leave well enough alone for now. I see the doc for a follow-up in about three weeks so I'll get his opinion, even though I trust all of yours a LOT more than I trust his, him never having really dealt with this disease personally.
Sue
I'll leave well enough alone for now. I see the doc for a follow-up in about three weeks so I'll get his opinion, even though I trust all of yours a LOT more than I trust his, him never having really dealt with this disease personally.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!