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Ulcerative Colitis
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Posted 3/11/2008 6:23 PM (GMT 0)
Hi everyone

I have been on Lialda for 8 months now and I am very thankful it exists. I have no noticeable side effects, and I am completely in remission. I take 2 pills daily and nothing else. My Dr. says I can keep on taking it indefinitely. I lose a little bit of hair in the shower, but I have long hair and always have shed, so I'm not completely sure its due to the Lialda. I would definitely recommend trying it...I am surprised more UCers are not on it.

Let me know if you have any other questions about it!

L
Posted 3/11/2008 8:51 PM (GMT 0)
I have been on lialda about a year now.  My side effects are mostly headaches and hair loss, but I also had those while taking asacol.  My doctor says I will be taking it indefinetly.  I have never had any tests however for liver function.  I wonder if this is something that should be considered when taking lialda long-term?  I just assumed that since it is basically the same med as asacol that it would be o.k. to take longer than 8 weeks.  I mean what person with UC only takes meds for 8 weeks?  I think that is a useless study and they should do one for longer.

Posted 3/12/2008 2:22 AM (GMT 0)
I agree with you, sore_guts! The study should be for long term use!

I, too, have the hair loss. I haven't related my headaches with the Lialda, though. I usually get sinus headaches treated with tylenol sinus. I have noticed more and more hair loss. It's a good thing I have lots of hair, but I still worry. I may try the biotin that others have mentioned. Have you tried it?
Posted 3/12/2008 5:01 PM (GMT 0)
Has anyone had their liver tested after long term use of either asacol or lialda? I would be interested to know about that. Thanks.


UC Aug 2007
2 Lialda daily
Posted 3/12/2008 6:26 PM (GMT 0)
I have had some hair thinning but I was writing that off to old age.

Has anyone tried the biotin treatment for hair? Does it work?
Posted 3/13/2008 12:12 AM (GMT 0)

Lad

I've been using Asacol for appx. ten years.  Up until two years ago I never had a liver test done, but when I started using Imuran June of 2005 I was advised to do an ALT (liver inflamation test) every 2 to 3 months. Acceptable value is 36 and below.  When I started on the Imuran I was at 20, six month later it was down to 12 and stayed there until last month, it shot up to 46.  The doctors still running tests to see what's going on.  I'm just glad I continued to stay on schedule with the test, I was getting comfortable and had started thinking about just doing it every 6 or so months.  My point is keep doing the ALT test if youre on Imuran or like drugs, as far as the asacol I'm not sure if it effects the liver, but by all means check with your doctor.

jac

Posted 8/31/2008 3:50 AM (GMT 0)
Just started Lialda today. Taking 2 1.2g pills in the morning. Also on 150mg Mercaptopurine a day. Switching from 2.4g of Asacol per day. Symptoms were coming back mostly because I rarely got my prescribed dosage of Asacol per day because it was too many pills to keep up with.
Posted 9/3/2008 6:58 PM (GMT 0)
Hey guys!

I was wondering if anyone had and problems with leg swelling? It seem since I have been on lialda( I am takeing 2 tabs twice daily) that my calves have been swelling after standing for 3 hours or so, some times just sitting down they will swell too! If anyone has any info of any kind that would be helpful!

Ally
Posted 12/8/2008 11:51 PM (GMT 0)

Hey guys,

I'm jumping over here from the Crohn's board.  My GI wants me to try LIALDA for 2 months.  He gave me a month's sample.  My insurance covers some but not all so it'd cost me $40/month if I decided to take it.  Right now I only pay $10/month for my Colazal.

I've been on Colazal for 4 years.  My GI told me the only reason he wanted me to try the Lialda was so I didn't have to keep taking 9 Colazal (3/3x a day). Instead, I could take 2 Lialda 1x in the morning and forget about medication the rest of the day.  He didn't sell this drug to me as a drug that would make me "better" than what the Colazal is already doing. He said it was the same thing as Colazal (a maintenance drug), just more expensive because it's a brand name.  He also just said it'd be easier for me to remember to take Liada since it's "time released" and I'd only have to take the 2 pills once a day.

I'm just curious as to how your doctors "sold" this drug to you.  I don't have much of a problem remembering to take my 9 Colazal each day.  And for $30 cheaper/month, that sells me on sticking with my Colazal for now.  But I just wondered if your doctors told you something different about Lialda than my GI did...like maybe it was a better drug than Colazal/Asacol. 

I'm always skeptical (and cynical!) when it comes to new drugs...I always picture a pretty pharmacutical gal coming into my GI's office offering him a trip to play golf in Hawaii if he gives away all her Lialda samples and prescribes it to "X" number of patients! tongue

Posted 1/17/2009 2:22 AM (GMT 0)

I have been on lialda for about 2 months now - 4 pills a day and I am still trying to go into remission

I just noticed that when i go to the bathroom some of the pills are coming out whole!  does anyone else have this problem?

Thanks!

Posted 8/18/2009 1:59 AM (GMT 0)
mish, are you serious! talk about a waste of money, get it... a waste... okay not funny, i have not had that issue, i think. i guess i need to look more. ><
Posted 8/18/2009 2:34 AM (GMT 0)
I've bee on Lialda for 2.5 years. In the beginning, taking 4 pills a day, I had lots of hair loss. My hair is thin to begin with, so I couldn't afford that. I just started taking 2 pills a day a month or so after I began Imuran -- so, Feb. this year. I'm still good...

As for the gas, try Gas-X (Ultra, Extra Strength) if that can work for you. I take it every night before I go to bed and it's like I'm a new person. It helps [me] a lot.

mish - when I was on Asacol, my pills would come out whole.. They're not getting absorbed properly in your body. You should talk to your doctor about that.
Posted 8/20/2009 3:20 AM (GMT 0)
Been on 4 tablets a day (2 twice a day) for 6 months now. It hasn't changed my symptoms at all really. I used to take 10 tablets of Asacol (5 twice a day) and I was just glad to not have to take so many pills. I actually have a sneaking suspicion that it might have made me WORSE since my symptoms have been getting steadily more severe since early May. :-/

Sorry I don't have good news. :(
Posted 8/20/2009 2:14 PM (GMT 0)
Hi - I have been on Lialda for almost two years. When in a flare I take 4 pills a day when I am not I just take two. I have never experienced any side-effects at all. It has been a very easy medication for me and does seem to help keep me in remission longer. I have had liver/kidney function tests twice run and everything has been fine.
Posted 11/16/2009 5:27 AM (GMT 0)
I've been on Lialda for about 4 weeks now. Seems like the UC is getting better every day. I still go to the bathroom about 3x day but that is much better than before! I am going to stick with it for a few months and see what happens.

I was diagnosed 5 years ago with Ulcerative Colitis and was immediately put on oral Colazal, Rowasa enemas and Canasa suppositories. I had a bad reaction to the Colazal (started coughing and developed pneumonitis.) Stuck with the Rowasa for a few years but after a while it didn't seem to be helping. I believe stress triggered a flare-up in May '09. I battled with it for a few months but recently asked my Dr for something new. He gave me Sulfasalazine, which gave me terrible diarrhea several times a day. Then he switched me to Lialda.
_________________________________________________________

Diagnosed in 2005 at age 30 with Mild/Moderate Ulcerative Colitis
Medicines I've tried: Colazal, Rowasa, Canasa, Sulfasalazine, Lialda.
Medicines that worked: Rowasa, Canasa, Lialda.
Currently using: Lialda 4x daily with evening meal, Rowasa enema 1-2x weekly as needed.

Post Edited (faith2000k) : 11/15/2009 10:31:53 PM (GMT-7)

Posted 3/9/2012 5:43 PM (GMT 0)
Hi everybody. My son was tentatively diagnosed with ulcerative colitis back in November. He ended up in the hospital for about 4 days until they could get it under control. He's an adult, but before he he ended up in the hospital, he was eating everything and anything (especially Sushi). I know that this condition is actually not diet related, but I'm thinking diet has got to have some affect on it. He's been on 4 Lialdas a day since he left the hospital. It's been working great, however, now he's starting to have flare-ups again, and the Lialda seems to be not be as affective. He has not yet had a colonoscopy (they were waiting until he was in some sort of remission so as not to stir up anything and putting him back to square one), but he's scheduled for one in a few weeks. Now they are thinking because the Lialda is no longer working as well, he might have Crohn's. This is why I'm thinking these flare-ups are diet related and probably not Crohn's: He's back to his old eating habits again and that includes Red Bull and Colas.

My question: How has having this condition changed your eating habits? Are you more careful? Has changing your diet made a difference in how you feel? I don't seem to be getting through to him. He tells me that if something affects him after he eats it he eliminates it from his diet - but then again, here we are dealing with his meds not helping as much.

Thanx!
Posted 3/9/2012 6:13 PM (GMT 0)
I've been on Lialda since last January. I love it!
Posted 3/9/2012 7:48 PM (GMT 0)
MyKidHasColitis,

There is no clear answer to your question, UC varies so much from person to person. For me, I have not found any relation to eating and my UC in the last 14 years. Other people absolutely have food related issues with their UC. Still others have no food issues while in remission but once in a flare up, they do.
As to the meds, I have only taken Asacol and Lialda, both mesalamines, and I still have flare ups from time to time. Sometimes years pass between flares. I'm not sure that means that the mesalamine is not working, as it seems everyone still has flares regardless of what meds they are on. I think UC is VERY poorly understood by the medical community and that is why we see people flailing about on every type and variety of medication out there.
Your son will have to figure out what his UC is and he might not yet be at the point where he is willing to make radical changes in his diet, and he very well may not need to. But, over time he will undoubtedly try different modifications to his diet, different supplements, differnt meds, and hopefully figure out what works for his UC.
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