Oral Mesalamines - Apriso

I take Asacol. I was taking 2 pills three times per day but when the doctor increased it to 3 pills three times per day I got worse. I decided instead to start taking 2 pills four times per day and I did ok. I suggest decreasing to 3.

His doc won't give us the enemas and he has lower bleeding. Finding a new doc!

Lialda (another oral mesalamine) made me significantly worse. I took it for 4 months and kept wondering why I couldn't get my symptoms under control. As soon as I stopped taking it - instant remission.

We are rather new to this whole thing, but it seems to me this intolerance/worsening of symptoms is not all that uncommon. I hope you post how he does if you do reduce the dosage. Wish you the best with your new doctor.

I'm convinced I have mesalamine intolerance. My doctor finally agreed this week and I took myself off of them. It's been 4 days or so, and while I'm still struggling, I do feel like the frequency dropped.

i read this way back when... drug companies will have you think 1% are intolerant but I suspect it's much higher

http://journals.lww.com/jpgn/Fulltext/2002/01000/Mesalamine_Intolerance_Mimics_Symptoms_of_Active.17

What diet change?

Keep in mind that lower/limited flaring can give upper gastro symptoms as well.

The Apriso, definitely an option to split the dosage.

He could be sensitive to the aspartame.

Did the doc say WHY he won't give rectal meds?

q

Apriso has aspartame, why, you swallow the thing? Wonder why they want you take all 4 Apriso in morning and other's are split?

Diet change lessened frequency 5 months ago and still works. Not kidding some days only once!!!! When bleeding going on, then 3x a day.

No sugar or artificial sweeteners, only honey or agave. No gluten, very low carb diet but some rice bread and a weekly baked potato. He lives off of Silk low sugar almond milk, bananas, applesauce, steamed carrots, sweet potatoes, almond butter, greek yogurt plain with added raw honey, eggs, chicken, turkey and shrimp. I even juice spinach, kale, celery, and apples for him. He even has a slice of cheese every day. Only oils are real butter, olive, or virgin coconut. I give him a healthy meal shake mixed with almond milk also, rests the colon. Sometimes I think he just has a bad bacteria they haven't detected yet, his main problem is inflammation and low bleeding. Seldom has tummy pain.

It's not that Apriso is "supposed" to be taken all at once in the morning -- it's designed so that it can be taken all at once if the patient wants to. The reason is that studies show that one of the biggest people have recurring flares is due to non-compliance with meds, and that the more times per day a medicaiton has to be taken, the lower the compliance. Lialda and Asacol HD are also once-daily mesalamine meds.

The amount of aspartame in Apriso is incredibly, incredibly low. I looked it up one time and it's a fraction of what's in a stick of sugar-free gum. Apparently, they put it it in there to make it not taste yucky to those who have trouble swallowing it, and therefore, hold it in their mouth a little while.

Quincy - Also the famous bone broth chicken soup. If he would he it everyday, I swear he would be fine! He gets tired of it. 

If you are having a terrible flare, has anyone tried Vancomycin - it helped my son really quick and he was symptom free in a few days.  It is much easier on the gut than Flagyl.

Post Edited (Dawn89) : 2/28/2013 12:01:07 PM (GMT-7)

Good research, interesting too! Maybe for those that VSL bothers, it is perhaps the S. Thermophilus???

I was a *long* time user of mesalamine (13 years).

2x400 mg per day (along with two or three tablespoons of psyllium per day) kept me at a low level of pain, but in ongoing pain none the less.

For 13 *years*.

In the spring of 2013, I accidentally discovered that 1 to 4 mg of melatonin (with B6 built in) noticeably reduced my ongoing pain. (As to melatonin dosage, remember I am an adult - for a child, definitely start at the lowest dose and consult a Dr.)

There is some limited research on Pubmed that indicates that melatonin can be a treatment for UC (possibly by increasing intestinal bicarbonate secretion).

By the Fall of 2012 I was confident enough of the efficacy of psyllium/melatonin alone to go off the 2x400mg mesalamine (for the first time in 13 years).

Result - *further* decrease in pain (almost to the point of non-existence, except when having a bowel movement...and even then, the pain is significantly lower).

In sum - I think there is a distinct possibility that mesalamines may be making some UC sufferers' symptoms *worse*.

Mesalamine was a lifesaver in the very early days of my UC (pre-psyllium, pre-dietary changes, pre-melatonin) but it *never* reduced the pain to a very low threshold.

Once I *stopped* mesalamine (I've been off nearly a year), my residual UC pain dropped by half or more.

Everyone's UC seems to be somewhat different, but at least trying alternative treatments is worthwhile.

The dubious recent history of Asacol and the Case of the Missing Generic suggests that the UC treatment industry may be a lot shadier than many of us thought.