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Posted 12/2/2009 5:58 AM (GMT 0)

Hello all,

My GI doc had me switch from Asacol (4 tabs, 3 times a day) to Lialda (2 pills, twice a day). It seemed to be working great for the first two weeks or so then BAM... I got really bad in a short amount of time (about 10 days). Has anyone tried this drug and if so, has it been working well or are you getting worse after being on it for a short time? 

My doc won't chage up any of my meds now untill I go in for a short colonoscopy next week so I just have to suffer for a few more days before I get any answers from him.

Thanks in advance for anything you can tell me about how this drug worked or didn't work for you.

Posted 12/2/2009 6:06 AM (GMT 0)
I have another question and I thought I would just add it here rather than make a new post.

Is weight a factor with UC? I see lots of posts about weight loss (I take it that is due to the constant trips to the restroom) but I can't find out if being overweight could hinder my healing. I don't think it helps but if I could for sure find out that it hurts me then I think I could just push myself to get the weight off as best I can.

Sorry if I'm asking questions that have been asked before or if i'm asking stupid questions but I just have a lot going on at the moment and i'm just really worried about my health.
Posted 12/2/2009 9:26 AM (GMT 0)
Hi...I'm assuming that you're flaring at this time...it could be the switch or just the fact that you're not also on rectal meds.

REgarding weight....I think it depends on what we eat, how active we are, how fast our metabolism is and how much we eat.

I don't think too much excess weight is a good thing, but I'll admit that once I started adding on pounds, I'm afraid to lose too much because I never want to get to where I was at 109 lbs 20 years ago. My flares are pretty much controlled, so I'd say that's part of the reason I haven't lost much weight.

q
Posted 12/2/2009 9:58 AM (GMT 0)
Lialda works wonders for me. But, listen to Quincy she helped me stay in remission for close to two years now. Treating yourself from both sides, Oral and Anal Meds, has kept me in remission. It is possible to live a normal life. Good luck to you and heed Quincy's advice.
Posted 12/2/2009 2:15 PM (GMT 0)
I guess the switch from Asacol to Lialda isn't a seamless switch for some people. Some do just fine, and others don't.

When my son had his GI appointment last month, we asked about Lialda. 2 years ago she had talked about it glowingly and had said when he was in remission for 2 years she'd switch him.... and he's been in remission for more than 2 years now.

At this appointment she was much more hesitant and said she could switch him but he might experience some return of symptoms... so she recommended we wait until school vacation in the summer to try.

I was just figuring.... it would be nice for him to be on a once-a-day pill by the time he's off in college, because he'll be more likely to not miss doses.

Keep us posted! - And I hope your symptoms go away. I agree with the others - you might try the rectal meds to get over this hump.....
Posted 12/2/2009 3:19 PM (GMT 0)

Hi There -

I was on Lialda for a long time...about two years.  I did not switch from one med to another though.  Lialda was the first (and only) oral med I took other than pred.  I never had any problems with it but taking Lialda alone would not get me out of a flare.  It did help minimize the flares and helped extend the time between flares.  Adding rectal meds as others haves suggested might help.  The only reason I stopped taking Lialda is that I am trying to get pregnant and my doctor wanted me to try rectal meds only.  I am currently tapering off of pred and am hoping that the rectal meds will keep me in remission without the Lialda for a while. 

As for the weight question, I have never lost weight due to UC as many others have.  I am in a healthy weight range and work out on a regular basis.  However, I was about 15 pounds over my normal weight for about a year and a half after my daughter was born.  I was told that being over weight can increase inflammation in your body so I would advocate for trying to maintain a healthy weight.  I do know I feel much better and have more energy when I am at a good weight!

Posted 12/2/2009 5:42 PM (GMT 0)
I was originally on Asacol before making the switch to Lialda ... it did take me a few weeks to get accustomed to it. What I did was this: Since my sleep was not interrupted by the UC, I took my Lialda at night after dinner. By doing this, it allowed the drug work its magic while asleep and I was not bothered by drug reactions from it. I did have a few issues during the day with some gas and urgency at first but it tapered off after about a month. give it a little time ... your colon is not going to heal overnight.

I have been on Lialda for about a year now and I am pretty much in remission (except for those few days a months when those pesky female hormones kick in ... and even then, the effects are mild)
Posted 12/3/2009 4:40 AM (GMT 0)
Thanks for the feed back eveyone.

Here is some more info on my deal.
My doc asked me to try Lialda for a month to see how I felt with it. I took it for three weeks then started to have a flare (restroom all the time with blood). I didn't know if this started because of the Lialda or not because I was told that I could get loose stools because of it (and that started after the second week) but the blood is what got me worried.

I have tried rectal meds before but they didn't seem to help (this was really early in my treatment).

The weight thing only came up because I am overweight and I just wanted to know if that could be keeping me from getting into remission.

**sorry if I have typos in here. I had to do this from my phone.
Posted 12/3/2009 5:37 AM (GMT 0)
Monkey, I have been on Lialda for almost 4 years now and have been in remission the whole
time. It did take about 3 months for it to really start working but when it did it works like a
champ. As far as weight goes I did drop as low as 185 but I tend to hover around 200 for the
most part. Give it a fair chance before you write it off. Good luck.


Later...
Posted 12/3/2009 6:19 AM (GMT 0)
monkey, were you using the Rowasa WITH the Asacol? nightly for at least a month?

q
Posted 12/3/2009 4:28 PM (GMT 0)

I can't remember the name of the rectal drug I was on at the moment. I know it was a suppository and my GI doc said it was the same basic medication that is in Asacol. I think it was called Cenna (or something like that)

 

It seems like most of you have had a good reaction to Lialda and I think I should give it a real try.

 

Just to let you all know what I'm currently on:

 

Asacol (4pills 3x a day)

Humira injections (1 every 2 weeks)

Just tapered off Pred (hooray)

Soft gel multivitamin

Generic Imodium (4 pills a day- Costco brand)

 

I know I should be taking more but I just don't know what else to try. I have been on probiotics in the past and that didn't really seem to help and they cost quite a bit (I think it was VSL3).

 

Any ideas?

Post Edited (monkey_99) : 12/3/2009 9:35:00 AM (GMT-7)

Posted 12/3/2009 5:44 PM (GMT 0)
So I have a related question. If I am taking Asacol and it is NOT really helping, is there a reason to consider switching to some other mesalamine pill, such as Lialda, Apriso, etc.? Or is it just a question of pricing, doses, etc.? I am getting really frustrated with this Asacol not working (and being do darn expensive) and want to really probe my GI about other options.

Thanks
Posted 12/3/2009 5:49 PM (GMT 0)
Lialda or Apriso might make a difference, simply because they dissolve differently. However, I do notice that you're only on 6/day, and I was taking 12. So it could just be that you need to up the dose. However, part of the reason I switched from Asacol to Apriso is b/c I was noticing Asacol capsules in my poo that still had medicine in them. Apriso dissolves at a lower pH than Asacol does, and people with UC are thought to have more acidic guts than normal folks do.
Posted 12/3/2009 7:02 PM (GMT 0)
People say they tried rectal meds, but they are as different as the oral meds. Can't really group them into one group and rule out using them because one didn't work. Keep that in mind.
Posted 12/3/2009 7:14 PM (GMT 0)
Exactly, Dr. A.....the rectal and oral meds should be used together. The enemas would be a larger dosage and get to the areas where the oral meds cannot "sit" long enough to do any good.

One needs to learn how to use them properly.

q
Posted 12/3/2009 8:55 PM (GMT 0)

What type of rectal med seems to be the most effective? .... suppository vs. enemas

 

The reason I ask is because I didn't think the suppository worked that well. It seemed as if by the time it dissolved and was ready to do anything that most of the medicine had come out and wasn't really going to do any good.

Post Edited (monkey_99) : 12/3/2009 1:58:48 PM (GMT-7)

Posted 12/3/2009 8:57 PM (GMT 0)
Enemas, because they reach farther into the colon, unless your problem is only at the rectum.
Posted 12/3/2009 9:03 PM (GMT 0)
I just wanted to say thank you to everyone for the insite. I will talk to my GI doc about things when I see him next week. I have really been stressed this time (more than others) because I am really scared that I'm going to not heal and will miss out on a lot of my little girl's life. She is only 1 month old but i can't stand the thought of not being able to take her to the zoo or seaworld or even just to the beach or camping. I'm willing to do whatever is needed so I can be there for everything she will need and or want to do.

Thanks again everyone.
Posted 12/3/2009 9:12 PM (GMT 0)
I didn't know you just had a baby!! Many congrats! Are you female? If so, have you made sure you're not having issues with post partum anxiety or depression? I had issues with PPA after my son was born. My UC hadn't been diagnosed yet, but whether the PPA was made worse by the UC or the UC made the PPA worse, who knows.

That said, just hold onto the hope that it WILL get better. I know what you're going through and can sympathize. Snuggle and rock your little girl all that you can right now...it's amazing therapy!
Posted 12/3/2009 9:48 PM (GMT 0)
I say give it more time. I was in the same situation as you. I'd been on Asacol (4pills 3x a day) for about a year and a half after I was first diagnosed with UC along with 25mg of 6mp a day. At first it worked pretty good, then recently I had a horrible flare that landed me in the hospital for about a month. I had a colonoscopy done and they actually found like 10 ascaol pills completely undissolved sitting in there. So they're not sure if it just hasn't been working this whole time of if for some reason they just stopped dissolving properly. And after a closer examination of my stools they found a few undissolved pills there as well which I'd never noticed before . But anyway, my GI switiched me to Lialda after I was discharged and had tapered off prednisone and for about 2 weeks. I didn't notice any change and actually got a bit worse that first week. But, after that things got MUCH better. I've been on it for a little more than 2 months now and I have to say, Lialda has been absolutley amazing for me. Before I thought I was in remission but now I'm sure of it. The improvement has been huge. I actually feel completely normal now. I've got only 1-2 completely formed BM's a day with no urgency or anything like that. It's much more convenient too. I take only 2 pills 2x a day. It's great not having to worry about meds in the middle of the day. So, for me it's been great. But, like any other drug it just doesn't work as well or not at all for some people. But I say try to give it at least another week or two to kick in because it took me at least that long. I always like to tell people to really give these 'safer' drugs like Asacol and Lialda a chance before giving up on them because they don't actually get absorbed into your blood stream. So, the there usually aren't any many side-effects and none of the scary side effects you can see with other drugs (prednisone, 6-mp, remicade, ect) I hope it keeps working for me because for now it's keeping me off Remicade which I'd like to keep as an option for as long as possible. Anyway, I say stick with it a bit longer and I really hope you start seeing results or find something else that works for you very soon!

Oh, about the weight, I'm not really sure how being a little overweight would affect UC. That's probably something to ask your GI about. But IMO as long as you're not grossly overweight it's probably nothing to really worry about. Besides, I know when I flare I always end up loosing A LOT of weight really fast mostly because my appetite is almost non-existent while i'm flaring so I try to keep my weight up a bit myself. But, then again, dropping a few pounds definitely isn't going to do anything bad for your health overall if you think you have a few too many pounds.

Oh, also, what RH_Texas_Gal said about taking the Lialda at night before bed really makes sense. Since the mesalamine drugs work by dissolving and working on the actual colon lining itself. So giving it the time to sit in there overnight makes a lot of sense.

lol sorry about the long reply :P
Posted 12/3/2009 10:00 PM (GMT 0)
Thanks Fruitgirl. No i'm male.. my wife had to have a c-section on holloween night and i'm happy to say both are doing great.

I'll ask my doc about the enemas next week... he is making me go in for the short colonoscopy on thursday so if i remember what he says after (that is always great fun with the drugs) i'll let you all know.
Posted 12/4/2009 6:12 AM (GMT 0)
What's a short colonoscopy....does that mean no biopsies?

Tell the doc you'd like to try Rowasa and if he could write a prescription for you to take with you.

Ask if you should set up an appointment to see him.

You could request light sedation so that you could have the opportunity to watch the monitor....it's a most worthwhile thing...truly!

q
Posted 8/18/2011 1:37 PM (GMT 0)
On the topic of lialda I had a few questions as i am getting frustrated. I was diagnosed with UC after being in the hospital in January of this year. Ever since the beginning I have been on lialda. Started as 2 per day now up to 4 per day. I am also taking dreaded pred and asaprythiene i believe it is called. I have 40 mg of pred and 20 mg of the other on top of the 4 lialda. Here is what im getting at.... I have been taking lialda all this time and I might be better then taking nothing but there is still blood when I go to the bathroom and it is quite a painful expierience. I am switching to a new GI doc that I will see in a week or so because my past just really didmt seem to care. My question is do you think its time to move on from the lialda? I have been taking it since January in the hospital. Is there any others i should ask my new GI about?

Also when i was in the hospital they did a short colonoscopy (sigmond or sigmoid) where they only went part of the way up. This is because i could not tolerate the prep they gave me to drink (half lefty or something) and could not prep me all the way. I know they are docs and they know what UC looks like but my concern is they coulx be missing something further up. Should i make arranfements to get a full one?

Hopefully this is on topic for this thread. I am just looking for relief as its been too long having this. I want to work towards remission. Im 20 years old and really comfined to my house because of the urgency most times and just because im comfortable here. Thanks in advance for your help!
Posted 8/18/2011 2:07 PM (GMT 0)
MY226

My own experience was that Asacol worked better for me than Lialda. I was originally on Asacol, new GI switched me to Lialda during the first persistent flare I had in a few years. I could never seem to get back down to "normal" for any length of time on the Lialda, so after requesting to switch back to Asacol after about a year on Lialda, I have noticed significant improvment. I am now on the Asacol HD. This is just my experience, many others have had great sucess with Lialda. Good Luck!!

Posted 8/18/2011 4:49 PM (GMT 0)
Asacol increased my flare ups so badly, that I lived in the bathroom. Been on Lialda for about 3 years and UC is between 80 & 90% under control. I increased my fiber intake to at least 30 grams daily, which I think helped (not easy being a diabetic) now living a pretty much normal life. For me I notice that I have more flare ups in the spring, than any of the other seasons.
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