Mesalamine intolerance?

My understanding is that the symptoms of mesalamine intolerance syndrome are similar to that of colitis. Per Mayo Clinic (and the rx pamphlet that comes with my rx):
"Check with your doctor right away if you have abdominal or stomach pain, bloody diarrhea, cramps, fever, headache, or a rash while you are using this medicine. These may be symptoms of a condition called mesalamine-induced acute intolerance syndrome."

Dizziness and shortness of breath can be a symptom of deficiencies - has your doctor run bloodwork for anemia, B-12, Vitamin D, etc?

Have you tried a different formulation of mesalamine (there are so many)? If it was an inactive ingredient bothering you, that may help, though I think that is probably not the most likely scenario.

Heart inflammation (Myocarditis is a side effect)? Rare but happens.

A mesalamine intolerance is a dramatic worsening of your Uc symptoms, much like a flare. You could go from 2-3 formed bms a day to a sudden 6-8 loose and very urgent bms.

Immunomodulators would be next: imuran/azathioprine or 6MP.

Sorry but Lialda is also a 5-ASA. :-( I was having somewhat similar symptoms as you while on Balsalazide. I was on it from August to January and by December I was in bad shape and getting worse. I was taking it 3x daily and sometimes I couldn't even keep the last dose down. I was nauseous and fatigued, and lost 25 lbs over about a month and a half. I noticed I felt better when I first got up in the morning and got progressively worse all day, and thought maybe its the Balsalazide? I stopped taking it and felt incredibly better the next day. That was in January, in February my Dr prescribed Lialda, and I dutifully filled the expensive prescription. Took one dose and was having full diarrhea and body spasms within hours. So much for that. My doctor still doesn't believe that I could be intolerant?! (Looking for a new doctor now) I have been on Prednisone since then which is not optimal but at least I can manage day to day. Hoping a new doctor can help find an alternative.

Yeah I was thinking of taking them again in a few days and seeing what happens. I just assumed since everything I've read says to discontinue use and contact your Dr if you experience chest pains or shortness of breath, that I should stop taking it and try something else. My GI doesn't seem to think the medicine has any side effects whatsoever so I don't really know what to think.
I wasn't anxious about taking the mesalamine (I had finally gotten used to taking meds everyday and accepted it) until my breathing got so labored I considered going to the hospital thinking there was something seriously wrong with me, I'd be much happier to know it was a side effect and all I need to do is switch meds. Though I'd prefer to stay on 5-asa as they seemed to be working just fine otherwise.

C.differently:

This is from the package insert for Canasa (mesalamine) rectal suppositories:
"Inflammation of the sac around the heart (pericarditis). Tell your doctor right away if you get chest pain or shortness of breath. Your doctor may tell you to stop using Canasa if you get pericarditis."

Five years ago I increased Apriso from 1 pill to 4 because of a flare. It was like someone standing on my chest and I could barely walk to my car. The GI said that there was no way these symptoms could be related to the increased dose of Apriso. But like you, I felt better the same evening when I quit Apriso on my own.

The same thing happened when I increased 2 Lialda to 4.

Now I am on 2 Lialda, generic rowasa, and occasional Canasa. I seem to do OK on this "cocktail", so you could try decreasing your mesalamine.

Since I can't convince any doctor that this rare but real side effect exists, I just tell them that I can't tolerate more Lialda whenever it is suggested. End of discussion. Sometimes in a flare I will up the Lialda to 3 for a week or so.

What do you think? How can a specialist not know about this? The first GI who denied a connection, and would not look it up, was followed by others. Now I am annoyed at your doctor too. Anxiety? Really!

You should be sent to a specialist....aka heart or pulmonologist...have the pertinent testing of imaging to see if you do indeed have anything toing on with either heart or lungs.

Yes, you could go to the hospital.

If it is the mesalamine, then it is. But rather than debating and trying different ones, you should be checked properly and thoroughly.

Go to your GP and get referred asap if your GI refuses (which makes absolutely NO sense to me).

q

There could be several reasons why C.differently experienced chest pain and shortness of breath. What I question is the fact that her GI did not consider that her symptoms might, just maybe, be mesalamine related. Published evidence for that side effect is easy to come by and from reliable sources. The GI in this case flatly denied there could be a connection.

I had the same experience and was sent back to my primary. I had blood tests, X-ray and EKG which were normal. Technically the X-ray was not that great because I could not inhale deeply enough for a good picture.

C.differently reports "suddenly" feeling better when she stopped the medication. So did I and that is another published aspect of this side effect--rapid improvement when mesalamine is discontinued.

@Natof9 my UC was doing really well, no blood or mucus while I was on mesalamine dr 800mg 4x a day and one mesalamine enema at night. I was eating and drinking pretty much whatever I wanted. I was just recently diagnosed at the beginning of February and have been on that medication ever since (I was doing 2 enemas a day and doing really well, Dr suggested I stop cold turkey and symptoms started coming back after about 5 days so I went back to 2 a day and tapered off to 1, stools aren't as formed as when i was doing 2 but were fine imo)
I am not sure if a liver test was done, though my liver (or the area where my liver is) was hurting pretty bad, brought that up to my GI and he told me it was probably due to alcohol. I had mentioned having a couple margaritas a week. Since I've stopped my medication my liver also does not hurt anymore.
I'm going in for a physical on Friday morning just to get checked out for my peace of mind, my chest pain is almost entirely gone but I'm still short of breath off and on. I'm not sure if it's anxiety related, or perhaps because I'm still doing my mesalamine enemas. I'm considering trying vitamin E enemas to see if they help.
I drink a lot of pure aloe from Trader Joe's which helped my cramping immensely, and lately had been drinking kombucha (sp?) also from Trader Joe's. (ETA I also take a couple spoonfuls of makuna honey a day)
@troubled my GI told me to continue to take my medicine and enema and that he would see me again in 2 months. Ive been struggling to cope with my diagnosis a bit, I have a few days here and there where I seem to fall into a really dark place, so when I saw my GI I was crying and in bad place which is probably why he chalked a majority of my symptoms to anxiety. I'm hoping I can find a more natural way of healing my UC the most I can since my body seems to react so badly to the first line of medicine...I'm extremely hesitant to try harsher meds
@natural it's really nice to hear someone else who experienced something similar, I don't think this is all in my head and I'm pretty in tune with my body (to a fault sometimes I think)

Post Edited (C.Differently) : 6/5/2017 3:20:42 PM (GMT-6)

C.Differently.... I'd love to hear any updates you might have. I have been experiencing similar symptoms and am on a large dose of mesalamine (4.8 g daily Lialda and 4g generic mesalamine enema nightly). My symptoms have been panic/anxiety, chest pain/pressure, lightheadedness and dizziness.

I've been to the ER twice and have had clean bill of health from every test under the sun (CBC, Iron, EKG, Chest X Rays). I didn't use the enema last night and felt markedly better today. I am just curious if you found out whether or not the sensitivity to mesalamine was the cause of your symptoms.

Thanks!

Post Edited (NotoriousIBD) : 9/15/2017 10:19:48 PM (GMT-6)

Yeah.... As somebody who had a severe mesalazine intolerance in the past, my symptoms were a dramatic worsening of symptoms (going far more often, more watery BMs, chills, fever, and feeling horribly ill). What I didn't have was: shortness of breath, chest pain, anxiety, and dizziness. And they started hours after my first dose, not weeks later.

Also, if you are intolerant to oral mesalazine you will also be intolerant to the rectal version. I tried mesalazine suppositories a couple of times - something my GI reassured me I shouldn't have a problem with. Well I did. Developed a flu-ey reaction (milder than with oral mesalazine but still noticeable) and passed blood a few hours later. I stopped, because there was no way that stuff wasn't going to make my proctitis worse if I tried to carry on.

PILs are legally obligated to include every single symptom that was reported during drug trials. But with the rarer symptoms, there's just no way of proving cause and effect. If a tiny number of people reported heart inflammation, well, they might have developed it anyway - there's no way of knowing.

So yeah, to me this does sound more like anxiety, especially when all tests have come back normal. (And it is important to get tests, because, while extremely rare, mesalazine can have serious effects on blood cells, kidneys etc. But it is rare and blood tests would uncover such problems.)

Hi all, update for you.. I had a barium swallow and have acid reflux. I'm glad I pushed for this test and didn't take he anxiety diagnosis that nearly three doctor's provided me!! True testament to being an advocate for ones own health!! Now trying to identify if I have low or high acid issues but at least I know I'm not imagining these symptoms!!!