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Lialda? The good..the bad?

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Ulcerative Colitis
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Posted 2/21/2010 9:40 PM (GMT 0)
Just started on Lialda on Friday after being on Pentasa for the last 8 years. Wondering if you have or had experience with Lialda, is it working, did it not? What your side effect were? How long did it take to start seeing (if any) results?

All of those kinds of answers I'd be interested in hearing about.

Thanks!
Posted 2/21/2010 9:52 PM (GMT 0)
I had to stop taking it because of blinding headaches. I switched to Pentasa and have had great results with very mild side effects. Why did you switch?
Posted 2/21/2010 10:37 PM (GMT 0)
I just have been having a (mild) flare now for about 9 months. It has been very tolerable..not affecting my daily life so much. But based on my colonoscopy that I had on Friday, my GI thought that it might be good for me to try something new since it seems Pentasa wasnt cuttin' it anymore.

I get headaches quite periodically before Lialda, so I guess I'll look to see if they are more or more severe. Thanks.
Posted 2/22/2010 12:10 AM (GMT 0)
I took it twice a day and the headaches started on the third day. I stopped after the fifth day, waited a week and tried once a day (doctor's advice) but had to stop after the second day. I tried Asacol many years ago and developed blinding headaches after a week. I can't tell you how glad I am that the Pentasa is working with only very mild side effects. I have been taking it for two weeks.
Posted 2/22/2010 1:49 AM (GMT 0)
i have been on Lialda for nearly 1 year now. started with 2 daily & got me into remission ... second flare recently and i increased to 3 daily. i got no headache or side affect.
Posted 2/22/2010 5:18 AM (GMT 0)
I have been on Lialda for 2 and a half years, 2 pills once a day. No side effects that I am aware of. Been in remission most of the time, just had my first flare since being on it about a month ago and I think it was set off by getting a nasty stomach bug.
Posted 2/22/2010 10:54 AM (GMT 0)
Got diagnosed myself in August..........Been taking Lialda ever since and I can't seem to get more than 10 days without an episode.  Taking 2 pills a day but this has been one long flare up.  Can't say I have gotten into remission yet.  Haven't figured out the diet yet to keep from aggravating it.  I guess I have suffered no real side effects of lialda although one of the side effects is indistinguishable from an actual episode.  The really bad is that is expensive while waiting for it to work.  But I am willing to try almost anything to get rid of the pain.
Posted 2/22/2010 12:51 PM (GMT 0)
I've been on 4 a day for almost a year now. No side effects whatsoever and only 1 mild flare.
Posted 2/22/2010 2:37 PM (GMT 0)
I have been on Lialda for almost three years now with no side effects. I have been up to 4 pills a day during flares and have not had any problems. The only thing I have seen at times is at the higher dose my stools stay pretty soft and I think that is from the Lialda but it does help me greatly!
Posted 2/22/2010 3:16 PM (GMT 0)
GREAT to see these responses!
So from what Im reading from most of you is that you can reduce the number of Lialda once in remission. (Obviously just like any of the other meds.) I have yet to get any headaches, so Im crossing my fingers! :)

This is such good info to have in starting a new med. Im looking forward to seeing if this will help me. At my one of my worst flares in 2007, I was taking 16 Pentasa a day! Not fun.
Posted 2/23/2010 10:36 AM (GMT 0)
I forgot to mention a couple of things in my earlier post.

I did get dizzy for awhile when I first started taking this.

I feel hungy all the time, even to the point of feeling like I am having a sugar fall off.

Never did get headaches.

It seems to sap my stamina (but that could be age related or strictly disease related) because now when I get tired instead of being able to stay awake it has now become it is time to go to bed .......NOW and that was not the case before I started taking these pills.

Posted 2/23/2010 1:27 PM (GMT 0)
I was on two Lialda most of last year and while it put me in remission the side effects were miserable. I became so tired, depressed, fuzzy headed, weak, headachy, tense, etc. I went down to 1 per day and I am less of all these things but I'm still trying to get off it altogether. I am in a low flare on 1 per day.
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