Lialda side effects? Fatigue, flu-like symptoms, chest pain, shortness of breath, stiff neck etc.

Hi everyone,

I have had some extremely strange health problems over the past few months that I think have boiled down to my UC medication - Lialda. I would love to hear your input, especially if anyone out there has had any similar experiences with Lialda (also known as Mezavant). Sorry for the length of this post but it has been quite the journey...

I am 21 years old, in college, and I was diagnosed with ulcerative colitis about one year ago. Right away my doctor started me on 4 tablets of Lialda a day (total of 4.8g of Mesalamine) as well as a Meslalamine enema (4g). I used the enema initially and anytime a flare was potentially starting (when I became particularly stressed usually). Overall the medication seemed to work well. The fatigue and stomach cramps I was having went away right away. In general my stool became more normal and only occasionally had blood. At the beginning of this year I was feeling particularly good and had a good 3 month stretch of no blood at all.

However, about a month and a half ago I began feeling sick, like I had the flu. I felt particularly fatigued, my neck felt stiff, I felt a little dizzy, had some muscle aches. I assumed it was the flu so I tried to take it easy as I finished up school. When I came back home I decided it was time to see the doctor. I was initially tested for mono and strep, both came back negative. My bloodwork indicated that I had some kind of infection with high levels of white blood cells (specifically monocytes and eosinophils). The doctors were surprised to find a substantial amount of pus and bacteria in my urine. They suspected I had a urinary tract infection and so I was treated with a 10 day course of antibiotics. My ulcerative colitis at this stage is doing alright but starting to get worse. The antibiotics didn't make me feel much better so the doctors suspected maybe my fatigue was cardiac related (they suspected my heart because my heart rate is particularly high, about 100 beats per minute when resting, I am rather athletic so this is not right). They did an EKG which had some slightly abnormal results, a chest xray which was normal, and a echocardiogram which also came back normal. My heart seems to be fine, except for the high heart rate (BP is alright, 131/85 usually).

In the midst of the heart testing (which took a few weeks) I woke up with very bad chest pains. The chest pains were centralized over my left side and felt like a crushing pressure. It was painful to breathe in deeply and so it made breathing difficult. I could find some relief depending on the orientation that I would lay in. It did not seem like a heart attack (no left arm pain / relief when i lied on my right side) so I tried to wait it out. After several hours of pain I went to urgent care. There they did an EKG and blood test. The EKG was again slightly abnormal but nothing significant. The bloodwork indicated that I did not have any cardiac trauma. I was sent home with the diagnosis "chest wall inflammation" and was told to take it easy, apply ice to chest if needed, and take tylenol as needed.

The chest pain did not stop. For about four days I just had this terrible chest pain. I would wake up early in the morning to difficulty breathing and the crushing pressure. The pain was generally localized on my left side around my pec and up to my collar bone. Right around the collar bone is where it would really ache. It made breathing difficult and painful. I had to take the maximum allowed number of tylenol to not be in agony. During these four days I also saw another doctor who immediately recommended I see my GI. She also did some more urine tests because she wanted to make sure that UTI was cleared up. Here is where it gets even more strange. With my second urine test, it came back positive for chlamydia. Now, I have only had sexual experiences with one person ever in my life, my gf of 5 years. My gf and I were each other's firsts. Of course I told my gf right away and she went to get tested, her test came back negative (saw it with my own eyes)! She tells me she never cheated on me and of course I do believe her. So it appears that I got chlamydia out of nowhere. I have no idea if this has anything to do with UC / Lialda but it was really out of the ordinary so I decided to include it. I was treated for the chlamydia with 4 pills of azithromycin immediately.

Okay, back to chest pain (the chlamydia thing happened concurrently with the chest pain, sorry this is hard to tell chronologically, lots happened). The fourth day of chest pain is the same day I took the azithromycin for the chlamydia. That day I realized that my chest pain would be terrible in the morning then slowly get better as the day went on, only to restart at maximum intensity the next day. I realized that I take my Lialda and Mesalamine enema at night and so maybe my UC medication was the cause for my chest pain. At this point my UC is out of control, even WITH the 4 Lialda tablets AND the enema. It's as if I am not taking any medication for it at all so I figured, theres not much harm in not taking my meds to test my theory. That night I did not take my medication (no Lialda nor enema). The next morning, no chest pain, i felt so much better!

The next day I saw my GI and told her this. She had me do some more tests and told me to stay off the Lialda but keep doing the enema. The next day, with only the enema, my lower back began aching (maybe it was my kidnies aching? I couldnt tell) which was something i had experienced before during my month of sickness. My doctor said stop the enemas, which I did. She instead prescribed me cortifoam enemas.

Since then my flu-like symptoms have gone away, no more major fatigue, no more muscle aches and certainly no more major chest pain. My remaining symptoms are the occasional slight chest pain and a nagging breathing/fatigue problem. I cannot exert myself for more than 10 minutes without being really out of breath and high pulse rate. It is as if I am out of shape but I am (was) very physically active. I have been off of Lialda for a few weeks now and have been on cortifoam for about a week. The occasional chest ache (nothing compared to previously, it now just feels like a sore achey muscle along my collar bone) and the fatigue/exertion problem have not been getting better. My ulcerative colitis is out of control though. This is the worst it has ever been. Bathroom trips every few hours. I have to strain during bowel movements and pretty painful stomach aches and cramps during the bowel movement. After the movement I feel depleted of energy and it takes me 30 mins or so to feel alright again. The cortifoam seems to simply not be treating far enough up to contain my UC. (I have been doing cortifoam twice a day for a week)

So, last night I decided to take some Lialda. It had always bothered me that the same day that I stopped taking the Lialda, I also took those antibiotics (the azithromycin). It could have been that that antibiotics treated me for some unknown thing and I unnecessarily stopped my UC treatment. I took 4 Lialda tablets last night along with the cortifoam enema. Today the chest pain and difficulty breathing is back. I am now convinced that Lialda is the culprit. I have another appointment with my GI next week (as well as with a kidney doctor) but I thought it was a good idea to reach out to the community finally.

Okay if you are still with me, thank you so much. My questions are as follows:
1) Has anyone else had an experience like this with Lialda/Mezavant? If so, what was the outcome and how are you treated for your UC now?
2) Is it possible that the problem is specifically with Lialda or is it with mesalamine in general?
3) Is the fatigue at exertion problem a symptom of a bad flare up or do you think it is drug related?
4) Any suggestions on drugs to ask my GI about next week that I might want to try?

Thank you so much for reading. I look forward to any support and advice you may be able to offer me, this has been a nightmare so far.

For the UTI I was treated with Levaquin 500 mg for 10 days (1 tablet a day).

My initial medication was 1 Apriso for a few months, but when I started to flare we upped it to the max 4 tablets. I would take them in the morning and by afternoon/evening I could barely take a breath or walk. I had chest and upper back pain, headache, fever.

The GI said this could not be from Apriso and sent me to my GP, resulting in a normal EKG and chest X-ray (but I couldn't take a deep enough breath to get a good X-ray.)

By this time I was so non-functional that I stopped the Apriso on my own and that same day the symptoms started to resolve.

With no medication at all the UC symptoms were a disaster, but got better with 2 Lialda. History repeats itself. In a flare I increased to 4 Lialda and the same side effects returned. I was stunned, having assumed that Apriso was the problem. But it appears to be that whole catagory of medication.

I got a second GI opinion hoping that the new guy would affirm my experience but he only said, "I have never heard of that." I think that means, "I don't believe it."

I think this side effect is real but rare. There is a past post on this forum that reports a similar experience. I was so sick on Apriso that I reported an hour-by-hour diary to the FDA. With Lialda I knew to decrease the dose right away and with other tweaking of Rx I hope to stay stable on a 2 Lialda and off of pred.

Meerkat55 said...
For the UTI I was treated with Levaquin 500 mg for 10 days (1 tablet a day).

Honestly, you would have been better taking rat poison - shame on whoever prescribed it to you. Levaquin is one of the worst drugs out there in the market because of it's adverse effect profile. Unless it's a life threatening situation, these class of antibiotics should not be prescribed to young people. It's linked to neurological and CNS damage as well as tendon ruptures. Be very careful when you are exercising because delayed reactions are common with these class of antibiotics (fluoroquinolones).

Each time I started Lialda I would experience severe tightness in my shoulders, back and some in my chest. I took some Tylenol to help relieve the pain. It lasted for about 6 weeks each time and then it was fine. Sounds like your pain has been going on longer than that.

Meerkat, that is a very good idea to try oral mesalamine in a different form and not give up after just Apriso and Lialda.

Right now I am walking the fine line with 2 Lialda hoping it's enough to be effective and not enough to cause those short-of-breath symptoms. (Adding rowasa helped me back down from 4 to 2 tabs.)

Who knew?! Not the two GI's I saw. As with other posters I have recently heard the word "pericarditis", and similar, associated with Lialda. Isn't mesalamine supposed to be one of the safest drugs around? Just relax and take it forever?

I would like to know mechanics of the reaction and sensitivity. Isn't release supposed to happen just in the gut? So above-the-waist symptoms don't make sense.

Since all this seems rare, others who are taking Lialda and others should not worry. You will not have to wonder if you are having a reaction. it will hit you like a truck.

Hello Everyone,

It has been almost a year since I posted this and I wanted to post the outcome in case anyone has to go through what I went through.

It has been a very long and rough year. After the events of the above post (neck stiffness, chest pains, etc.), I spent about the next two months completely bed ridden with an uncontrolled flare (doctor was afraid to give me any oral medication because she was afraid the Lialda hurt my kidneys due to the weird urine tests). Over those months I lost a lot of blood, became very dehydrated, severely malnourished, and my muscles atrophied. I went from 150 lbs to around 100 lbs. I was admitted to the hospital twice for several blood transfusions and saline drips. It was very scary and outrageously painful. Hellish. I ended up needing to take the maximum allowed amount of Vicodin every day in order to make it through. Ultimately I ended up seeing one of the world's best UC GI's and she finally agreed that my symptoms were due to an allergic reaction to my Lialda. It is rare but possible. I was on prednisone for many months but that was not working for me. Eventually I was put on Remicade and 6MP. I have been on these drugs for about half a year now and finally my horrible flare has stopped.

Since then, I have tapered off of prednisone (horrible drug) and regained my health. I am finally strong and symptom free again. Unfortunately, I did another colonoscopy earlier in the year and my doctors confirmed that I actually have Crohn's, not UC as originally diagnosed.

So, for those reading this story. If you are experiencing flu-like symptoms, chest pains, fatigue, etc., and you are on Lialda...ask your doctor about it! It IS possible to be allergic to the stuff, even if you have been using it for months. It is rare but possible.

I hope this helps someone.