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Side effects with Lialda

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Ulcerative Colitis
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Posted 8/19/2013 1:31 AM (GMT 0)
Hello,

I am new to joining, but have actually been reading threads for a few weeks since I was diagnosed with UC in early July, and appreciate all the information I have received.  It is also just good to know that if you have this condition, you are certainly not alone, unfortunately.  I was diagnosed with severe pancolitis and put on Lialda 2.4 gm once daily.  This medication worked immediately for me, within a couple days.  Diarrhea and bleeding completely stopped, so I guess I was very fortunate.  Even my doctor was surprised, as with the degree of inflammation, he thought I would need stronger medication to achieve that quick a remission.  I have two questions.  Has anyone noticed this quick a response (hopefully!), and also a question about a possible side effect.  I am a 54 year old female with a history of spinal arthritis from a young age; however, it has only been problematic in terms of pain occasionally.  Shortly after starting the Lialda, however, I began to notice severe pain in my spine, to the point where it feels like my spine is breaking; can't stay up on it long, lie down, etc.  The medication information on side effects says it can cause back pain.  I guess with side effects, a medication is likely to affect a person in their "weak spots," but has anyone else noticed a worsening of back or joint pain with this med?  Thank you, and thank you for these forums.  I did call my GI, but he has not gotten back to me.  Just curious. 

Posted 8/19/2013 12:54 PM (GMT 0)
Hi welcome to the forum. I'm surprised you did so well on only 2.4 gm. Thats a maintenance dose where as 4.8 gm is the dose usually used to treat a flare. I always take the 2.4gm and bump it up if I start to see symptoms. It worked really fast for me too when I was first diagnosed.

I do not get any side effects but I do have joint pain which is just part of this nasty disease.
Posted 8/19/2013 1:56 PM (GMT 0)
I would get severe pain in my shoulders and back for the first two months on Lialda. Went to the chiropractor a few times, and he kept commenting on how tight my back was.
Took some OTC pain relieve/muscle relaxers and it went away after a few months.
Posted 8/19/2013 5:37 PM (GMT 0)
Thank you, sherbear and jay79, for your responses.  Sounds like you have had some pain issues also - interesting.  It's hard to tell for sure whether it is a side effect, but especially jay79, yours sounds very similar - I'm glad the chiropractor helped, but I was wondering what type of pain medication you use - just Tylenol? - as my doctor said not to use any other NSAID's because of being on the Lialda.  Also, I notice that it looks like you have started on the Lialda at three different times?  Maybe it was because you were started on other medications, or were those times of remission?  What I am wondering is if one has a remission for a long enough period, whether you can go off medication, or whether you need to take it indefinitely as a maintenance?  Maybe some people go off it and see if they have a problem, then restart it?  Just wonder what the general experience of people is as far as taking the  medication long-term.   I won't complain, though, if I can get by without having to take steroids or the biologics.  I know this is a wait-and-see thing, that things may change.  I'm glad it seems both of you are doing well with your UC at this point.  Thanks again. 
Posted 8/19/2013 6:06 PM (GMT 0)
Uc is an auto-immune disorder (your immune system is attacking your large intestinal lining), and around 25% of us also get another auto-immune disorder (also have rheumatoid arthritis, lupus, etc.). Have you considered the option of getting screened to see if your immune system is now also attacking something else in your body (attacking joints or other things) and therefore causing you chronic pain? Maybe ask your primary care physician and get some tests done to check for telltale inflammation elsewhere in your body.
Posted 8/19/2013 6:34 PM (GMT 0)
Thanks ipoop (love that name - how appropriate, huh?) for the info.  Yes, I was aware of UC being autoimmune, but I guess I tried to connect the pain to a side effect as I had a long history of back arthritis prior to the UC, and felt maybe the med was just worsening it.  It is also possible, however, like you said, that some new type of process along with the UC is going on.  Interestingly, the CRP lab test they did when I was diagnosed with the UC came back within normal limits, not showing any inflammation, even with the severe colitis.  Go figure - the body is hard to figure out, for sure.  Will have to re-consult a doctor to get the answers.  Appreciate the insight.  Take care.      
Posted 8/19/2013 6:47 PM (GMT 0)
Upon being diagnosed my GI prescribed me 2.4g of Lialda a day. Experienced constant tightness in my shoulders, and took Advil, not knowing at the time that NSAIDs were on the THOU SHALT NOT list. Thankfully I didn't have any adverse reactions to it.
After I started flaring a few years later we bumped up the Lialda to 4.8g per day, and eventually moved on to Remicade. Doctor said to stop the Lialda seeing it wasn't doing anything for me.
Switched GI's and my new one suggested going back on Lialda to help prevent colon cancer. The second time I went back on it I experienced pain in my mid/lower back for a few months. Took advil for about 6 weeks until the tightness went away.

Be very careful with NSAIDs, might want to try Tylenol instead.
Posted 8/19/2013 10:10 PM (GMT 0)
Oh, thank you for providing your history.  I'm sorry you had to eventually start on Remicade, but hope you are doing alright on that; seems like you are.  I'm sure there will come a time where I may need something different too.  That is really interesting about Lialda maybe helping prevent colon cancer - never heard that, but I know we have a higher risk.  I was unusual in the fact that I developed this late at age 54; you are probably much younger?  It seems like your pain was definitely caused by the Lialda, as it happened twice.  To me that is very strange; with Lialda being an anti-inflammatory, why it wouldn't help other pain rather than cause it?  It must work topically only on the bowel like they say, which in reality is good because it would cause a lot more systemic problems if that was all absorbed.   I appreciate the advice - thanks!
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