Major Lialda (Mesalamine) Side Effects?? Does this sound right? Anyone else?

Good Morning,

This is my first post, but I have been lurking hear for some time.

I'm a 36 year old male who was diagnosed with UC and PSC early 2011. Prior to this, I was extremely healthy and never really had any health problems.

I searched the forum and haven't really found an answer to my question, so I apologize if I have asked something that has been covered multiple times.

Back in 2011 when my GI did my first colonoscopy, she saw some inflammation and immediately put me on Lialda. At first, I notice a little bit of soreness in my legs and once in a while I would wake up in the middle of the night and feel like my legs just wanted to move around. I called the doc and she said it might be a slight side effect of the meds, but not to worry and it would go away. Over time, I started developing other weird symptoms that I could not explain and just tried to ignore them. Mainly a kind of stuffy feeling in the back of my throat and occasional feelings of anxiety. The leg soreness slowly increased as well.

So, in May of this year, I went in for my second colonoscopy and my doc said all the inflammation was gone and everything looked excellent. Man was I feeling great! They also told me that they found a tiny nodule in my rectum that they we going to take out and do an ultrasound in June. Nothing to worry about.

Oh, let me add that I had never really had and ibd symptoms either (d, cramping etc) before. Long story short, in the beginning of June I began having cramps at work and had a massive bloody d and passed out. I was rushed to the hospital and ultimately had to get a transfusion and went home feeling week after three days. They said I fainted because I saw the blood and I was not used to it and the D was normal for UC.

After I went home, this seemed to get better. I regained my strength and started working out again. I then went in for the procedure to remove the nodule and ultrasound. Just as my doc had stated, it was benign and everything was good.

A week later, I started getting weak and lethargic. I had chills a a couple of time and all of my muscle aches in my legs got worse. My arms began to get sore as well. The phlegm in my throat would occasionally turn into a cough and then back. Then I stated getting pain in my rectum and began having horrible anxiety. So, naturally, I freaked out and went to my gp. He did a ton of blood work, cultures, etc and said nothing abnormal except my platelets were low and I had abnormal liver enzymes(I have psc). They did more tests and nothing.

I saw my GI about the rectal pain and they said no infection and everything was healing fine.

So I began reading the side effect of Lialda and I was startled. I had like half of them. I called my docs and they agreed it would probably be best for me to get off of Lialda for now.

My questions are:

Is it possible for side effects to develop over time? Or do they only manifest immediately?

Has anyone else had any of these symptoms? The website said they are rare.

I've been off of it for three days and see some reduction in symptoms. My legs are a lot less sore and I have not had and rectal pain. Still a little bit of anxiety, cough, and fuzziness??? If I was on Lialda for 1.5 years, how long do you think it would take to clear my system and really begin to feel normal?

Why are doctors so quick to dismiss the symptoms as a side effect and allow it to get this bad?

Thank you so much!

Post Edited (Bushido1) : 8/31/2012 2:26:27 PM (GMT-6)

As always, I think that using rectal meds would help your situation a lot. The mesalamine retention enemas have very low systemic absorption, and are very effective at treating inflammation in the distal colon (rectum and sigmoid). Perhaps that's all you'd need if you can't tolerate the oral meds.

I've been on Lialda since this April. I typically wake up fully twice during a typical night's sleep -- I wouldn't call it insomnia though. Before I got uc it was once some nights and other nights I wouldn't wake up at all (very rare these days). I guess it is possible it is from the Lialda, I hadn't really thought about it until I had read your post, but I am not entirely convinced it is the cause.

I've never had any leg pain, anxiety, fatigue that I could relate to this drug. Some people with uc have cramps pain from it, I am lucky that I do not.

I second lazbern's comments on the mesalamine retention enemas as they are quite effective. I use them a couple times a week, and I use them more often when needed to control inflammation. When the mesalamine enemas are used 3-4 consecutive days they can make a big difference. Basically taking me away from a series of bad, urgent mornings (4 or more poops a day) back to a series of predictable, good mornings (2 a day).

I had horrible side effects on lialda.

Sorry, I would say it is more waking up fully in the middle of the night and not insomnia. It takes about 1 hour to fall back to sleep without any apparent cause.

SS0000, what side effects did you have?

All those class of drugs tend to give me headaches, make my colitis symptoms slightly worse, and I have noticed my RLS really didn't start until after I was on those drugs (Restless Leg Syndrome).

I've been off it a few years though so I can only really say it was headaches, the RLS shouldn't have stayed around this long after not being on the drug.

Howdy BushiDo,

Is your onscreen handle a description of 'Big Hair-Do', as is Quest Love's hair Big (plays with the Roots on Jimmy Fallon's show)? This just a way to make personal this cyber mode of communicating and be able to recall it.

about Lialda side-effects:
Don't give up the pursuit to understand and minimize or eliminate these symptoms. Side-effects or not, as a result of UC and/or it's treatment, these symptoms seem to present a huge impact on your quality of life (QoL).

["... weakness and lethargy ... makes me feel like I am trying to move a mountain. My doc wants me to come in next Friday ..."]

Because of the side-effects, I stopped taking Lialda after a few months trial. Daily I had abdominal bloating and pain, lots of gas and explosive evacuations. Initially I thought it might have been a consequence of having disrupted the microbial flora (post-bowel cleanse & scope). But there was no improvement with probiotics & patience that my body would adapt. Gotta love personal science; It abruptly cleared up as soon as I stopped the Lialda.

Regarding the night waking & leg cramps: These were tolerable side-effects experienced while I was taking prednisone, not Lialda.

Not knowing your story of prednisone use - it's possible (and way too common) that you may be experiencing symptoms of post-prednisone Adrenal Insufficiency. Most prescribers fail to explain the risk of developing Adrenal Insufficiency. They also aren't on the lookout for it after tapering. So the impetus to investigate falls on you, the patient.

Here is a concept worthy of consideration; What criteria do or will you & your doctor(s) use to set goals for treatment outcomes?

In the Western Paradigm we think of UC, a chronic condition, in terms of symptom management and 'remission' (vs cure).

But, what about global symptoms like fatigue that cross body-system boundaries and medical specialties?

Gastroenterologists function within the context of a defined, limited, and discrete clinical field. Asking a GI to think and act outside of her/his professional box quickly becomes an exasperating cognitive quagmire for both the doc and patient. What to do, then, when the problem is primarily an impairment on the QoL and not a well-defined objective medical problem? This is why the individual living with a chronic condition has no choice but to self-educate, become one's own advocate, set one's own goals, and learn to negotiate with medical professionals.

Can I suggest a couple of things?
Investigate "Adrenal Insufficiency" and "Prednisone Withdrawal." To start, there is a SEARCH function at the top of this forum. When initially searching for answers on the web I found that MedicineNet.com had the best information.

Then, being informed at your Friday GI appointment, request that your adrenal function be evaluated (blood testing for Cortisol and ACTH). This should be in addition to comprehensive screening of Chemistry, Blood Cell counts, B12, Folic Acid, Thyroid, Testosterone: along with any other areas of concern that you two identify & chose to investigate.

It is my hope that you will soon be sleeping and feeling better; have more natural energy, vitality, & Chi (enough to move your own metaphorical mountains); and get back to the gym with a hop in your step.
Ciao, DennyRae

Besides the cost, I plan to switch from Lialda back to Sulfasalazine. I believe Lialda is to blame for my hair loss, lethargy and deep muscle and joint aches. While in my proctitis flare, I didn't notice that I hurt this bad. The Sulfasalazine is an old school drug once often prescribed for rheumatoid arthritis which is why I believe my joints and muscles felt better when I was on it.