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problems with Lialda

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Ulcerative Colitis
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Posted 3/23/2009 6:01 PM (GMT 0)
I have been taking Lialda for almost four months.  I have lymphatic colitis.  I was taking 3 pills once daily, now I am taking two.  I had horrible side effects when i first started taking the medication - severe cluster headaches, nausea, and numbness on the right side of my face and arm.  The effects eventually wore off after a little over a week, except the nausea. I still feel like I am not right, but my doctor has encouraged me to continue to take the drug for at least a year.  I also have panic disorder which got worse than ever after i started taking Lialda. I had an upper GI and everything was normal other than mild acid reflux.  I finally got back on effexor for the panic attacks, never had problems with it in the past, but now I have developed tremors.   Possibly the tremors are from combining the two? I have lost a lot of weight as well, mostly from not being able to eat bc of the nausea.  The colitis started getting better with effexor as did my appetite (nausea still present but i don't have a panic attack over feeling bad as much). I know stress can make the colitis worse.  Also, something I can find NOWHERE online is the fact that my urine is purplish, I started noticing this after the first month of taking the Lialda.  It is not blood as I have peed in a cup several times, possibly dye but the doctor never heard of it before.  Also about three weeks ago I started having sharp abdominal pains in my lower right and left abdomen (intermitant but when it hurts it lasts a while, does not seem to be related to eating food), this has decressed slightly since lowering my dose of Lialda to just 2 pills.  Went to my GI doctor and he did not seem concerned because I was not bleeding from anywhere or had a fever.  He said it was IBS. Anyone have problems w/ Lialda?  Anyone been on it longer than two months??  It is really hard for me to tell what is wrong bc of the panic disorder, which makes me very physically ill; however I am worried my docotr is just thinking the same thing and not taking me seriously bc of the panic disorder, he is extremely confident in the Lialda even thou only two 8 week trails have been conducted on the drug and no studies have been done on drug interactions.  If anyone has any input I would greatly appreciate it. Thanks!
Posted 3/26/2009 5:20 PM (GMT 0)
I just read your post. I have been on Mezavant (same as Lialda) since Sept'08. By the end of Janauary '09 I became ill with what I thought was the flu. I experienced fatigue, dizziness, fever, chills, the sweats as well as chest pain and stomach pain. After about a week I felt well enough to go back to work. However I continued to experience chest pain, stomach pain and night sweats. I also had sleep problems because of hightened anxiety. The anxiety worsened as the weeks progressed to the point of nausea. I have never had panick attacks in the past but I felt that I experienced 1 or 2 during the folllowing weeks and eventually saught the assistance of my GP. As a result I have been off work since the middle of February. My GP is trying to eliminate heart problems as one of the causes of the chest pain. I went off Mezavant for a week and felt alot better but the UC symptoms came back. I am back on Mezavant and the chest pains returned. I am convinced that all of my symptoms(including those that I thought were attributed to the flu) were as a result of the Mezavant.
Posted 3/26/2009 6:05 PM (GMT 0)
Lialda is a relatively new medicine. I'm sure there are side effects with the drug that are not yet known.
Posted 3/26/2009 11:39 PM (GMT 0)

I took Lialda for three weeks last fall trying to overcome side effects and get into remisiion along with Canasa.  Talked to doctor and stopped Lialda because I refuse to take something that makes me sicker than UC.  I had flu-like symptoms - all the ones described and hard to function even when you are not working, etc.

I think I gave it long enough to get used to the side effects and I was only taking one a day.  UC did get some better!

ElaineNY

Posted 3/30/2009 2:07 PM (GMT 0)
I have stopped taking the Lialda now for 5 days, so far I have not had any bowel flare ups (I did not consult my doctor, I just want to give it time to see if there is a difference);  the abdominal pain has greatly reduced (still there but less intense), although i am a little constipated.  My tremors have slightly decreased.  I have been getting headaches, migraines, not sure if it is tension or withdrawl.  I would like to note on the stomach pain,  I have burning pain in upper and lower abdomen this has been going on since the start of taking the lialda, but is still there (upper GI found nothing) also when i push in on my stomach (under the middle of my breast bone) it hurts (somewhat of a sharp pain).  I feel like my body hates me. It feels good just writing this stuff down and sharing it, so thanks to those who have responded.  :-)
Posted 3/30/2009 10:35 PM (GMT 0)
I have been on Lialda for 7 months now. First I was on 2 pills daily and then 4 daily and now I am back on 2.

I switched to Lialda from Colaza. This is what I will say about it. These medications (5-ASA) only prevent me from having really bad symptoms and don't stop me from flaring therefor I ended up going on pred anyways. But I was having stomach cramps and bloating which I thought were from the UC. However once I switched to Lialda all of the cramps and intestinal pain went away. As well as bad yellow D (I know the yellow was from the colazal).

So in my instance the Lialda was much less harsh on my system yet provided about the same benefit to my UC.
Posted 4/5/2009 10:51 PM (GMT 0)
I have been on Lialda for two months now (two pills a day) and had horrible headaches and stomach pain for about two weeks. The side effects subsided, and I have felt great for about 4-6 weeks now. In the past I have been on Pentasa, Colozal, Asacol, Rowasa enemas, Canasa suppositories, and azulfadine. Although these medicines will work for me temporarily, nothing works for extended periods of time; however, the one thing I've found with every drug is weird side effects that even my doctor hasn't heard of. I'm keeping my fingers crossed, but since the other 5-asa drugs didn't help me for very ong, I don't know if this one will. Be careful with drugs like Effexor, Lexapro, etc...sometimes they can do more damage than good, especially when you come off of them. Effexor did a number on me when I came off of it, but once I "withdrew", so to speak, I was ok- no lasting effects from it. Best of luck to all!
Posted 4/7/2009 9:03 PM (GMT 0)
The effexor I have been on and off for about 5 years now, I have not had problems coming off of it in the past (even when i did it cold turkey), I was lucky bc I have heard horror stories about the depression coming off of it, even when gradually reducing the dose.  hopefully when i decide to come off it again, gradually, I will have the same response . . . I thought it interesting that as soon as the effexor kicked in my sudden bathroom urges started to go away, and now they are almost completely gone and I have no more d.  i have been off the Lialda for two-three weeks.  I know the type of colitis I have responds negatively to stress (I am a very stressed individual) so i wonder if i needed medication at all as far as the Lialda is concerned.  The Mayo Clinic website does say that many people do not need drugs to get relief from the microscopic colitis, that diet and less stress was enough.  I did the diet thing (no more dairy and fatty foods, less alcohol).  I hope it does not come back as it has only been a few weeks, i think most of the Lialda is out of my system, the tremors have slightly subsided, less dizzy, way less abdominal pain, less headaches, and almost no more dark purple in the toilet . . . which I still have not come across anyone else that had the purple in the toilet (it looks a lot like blood but its not), then again most people taking it have UC so it may be hard to tell. 
Posted 4/7/2009 9:43 PM (GMT 0)
I was fine on Lialda for 2 weeks then developed a rash, then my UC symptoms became worse. I also had this crazy annoying dry cough the whole time I was on Lialda. Turns out I cannot tolerate any 5ASA's. sad
Posted 4/10/2009 3:15 PM (GMT 0)
I tried Lialda twice last summer, each time for 4-5 days, and each time I became very sick -- increasing anxiety with each day ending up with complete sleeplessness, severe nausea and inability to eat, more blood in my stool. Both times, it took me a couple of weeks (and tons of other medicines) to get back near normal. It's not entirely clear that the Lialda did this -- at least, not to my doctor -- but I'm really hesitant to give it another try. I spent my sixteenth wedding anniversary lying down, feeling like the world was spinning, getting up occasionally to vomit or have D, and on the phone with my GI. Not an experience I care to repeat.

I am prone to anxiety and insomnia anyway, but it really seems that mesalamine gives me problems. Even with just 1000 mg Canasa a day, I start to feel more anxious after a few days, and then my sleep gets weird (waking early in particular).
Posted 4/10/2009 3:47 PM (GMT 0)
Lilda is the same medicine that's in Asacol...just the delivery system/coating is different.
Posted 4/10/2009 5:21 PM (GMT 0)

bbc said...
Lilda is the same medicine that's in Asacol...just the delivery system/coating is different.

The difference is that Lialda contains the highest mesalamine dose per tablet.
Posted 4/10/2009 8:40 PM (GMT 0)

subdued said...

bbc said...
Lilda is the same medicine that's in Asacol...just the delivery system/coating is different.

The difference is that Lialda contains the highest mesalamine dose per tablet.

I was referencing the drug (mesalamine) itself which is the same as Asacol since the thread starter seems to be having issues with mesalamine. Lialda's special timed release delivery system (mmx technology) is what makes it unique and allows the higher amount of mesalamine per tab. Thought most here knew you take less tabs with Lialda than Asacol, as that's how its been marketed since day one...
Posted 4/13/2009 1:00 AM (GMT 0)
I have been taking Lialda for a few weeks now and I don't think I've had any side effects. And before that I was taking regular colazol for about a year with no side effects. I'm tired a lot but that's no different than before.
Posted 4/15/2009 3:33 AM (GMT 0)
I've been on Lialda for about a month and a half and the only side effect I have is I will occasionally get an upset stomach. Nothing serious, though, and usually subsides after eating. Overall it has worked very well for me thus far *knocks on wood*.
Posted 5/1/2009 12:15 PM (GMT 0)
I havent been on Liada but think ive pretty much been on everything else for my UC. Took me 3 years toget diagnoised i didn't feel the dr were listiening to me, omly until i lost nearly 3 stone in just over a month they finally managed to diagose me that was back in 2003. since then ive been on asacol which made it much worse, then they put me on balzalaside which worked for about a year and has since stopped working, also had every flammin enema their is plus steroids. None doing anything except making it worse. I have been on Msealazine ( mezavant) since nov 08 and have just been taken off, similar effects to asacol they contain 1 ingredient which it turns out my body just doesn't like. They have now pu me on an immune suppressant to see if that does the trick. Is anyone else on this? im beginning to get really fed up of this as i have never gone ito remission although the symptoms have died down im still going the loo at least 8 times a day and always bleeding.
Posted 5/1/2009 12:51 PM (GMT 0)
Have you tried talking to a good pharmacist about your side effects? The purple urine sounds very scary. I wonder if it is a condition called porphyria? Look up the medicine and see if that is one of the side effects. Also, have you had liver function tests lately? Good luck and best wishes to you! GI docs seem very inflexible to me.
Posted 5/3/2009 4:35 AM (GMT 0)
Hello.. I have been on Lialda for gosh... somewhere around 6 or 7 months now and it's been fine for me as far as side effects go... I can take it on emtpy stomach or full stomach and I haven't had a single side effect that I'm aware of... It really worked for me as far as quieting down my UC, but not completely stopping it.. I find that I have to take oral meds and rectal meds to keep it under control.

But as far as side effects... I haven't had any and I am thankful for that....
Posted 5/4/2009 12:10 AM (GMT 0)
Been taking Lialda for more than a year now, 4 pills every morning, no problems at all. Also have a Remicade infusion every six weeks and Canasa suppositories twice daily. It seems like a lot of meds but it's actually the LEAST meds I've been on for my UC and they all seem to be doing the trick without side effects. (I had SEVERE side effects from Imuran in just two weeks and have been left with osteopenia and arthritis from two years on Prednisone.)

Meesh
Posted 4/28/2014 3:43 PM (GMT 0)
Hi.i have IBD,possible Crohn's,diagnosed about 2 weeks ago.3days on Lailda and I'm noticing abdominal pains,there not bad but seam to be worse than yesterday.Also my skin on my belly is super sensitive,i can feel this sensitivity now in my back also.IM new with this stuff,just letting you know my experience so far.and not liking it at all!!!!!!!!!!
Posted 4/29/2014 1:24 AM (GMT 0)
Hello,

I've been taking Lialda 4 pills a day for least 4 years. I haven't had any side effects with this medicine. My doctor did tell me to take all 4 pills 1 time per day with a meal containing fat. So I take them with my dinner and don't have any problems.
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