Lialda- I think my GI is stalking me

DebE13 · Post by **DebE13** » Tue Jun 17, 2014 7:41 pm

I started entocort in February of 2012 and was on a high dose (9mg)for a short period of time. Weeks maybe. It was after a long, nasty stretch of prednisone. I basically started to taper immediately because I wanted off in a hurry. I just found this site so my healing hadn't even begun. That may not have been the best choice but that is my history. I've been hanging out at 3mg every other day and for months 3mg every 4th-5th day. I still have D but nothing like two years ago. I was in an ok place until my GI out of the blue took an interest in me. The nurse heard D and now they won't leave me alone. I declined the pepto treatment. Then they wanted me to up the entocort again. I did. After two days of 6mg I had bad cramping and a general yuk feeling. I'm back to 3mg every other day and am mostly unpredictable. Almost normans, D, WD, a little bit of everything but nothing new for me. With lots of work issues/stress going on right now I am ok with where I am at.

I got a call today that they want me to add lialda and eventually go off entocort. There was a very long pause. Not too excited about that one. Why would they want me to do that? I have a permanent scowl after that suggestion. I didn't ask for their opinion and am feeling annoyed that I basically had no contact for a year and a half except for my annual visit to keep the script active. I don't mean to sound so ungrateful but they have done more harm than good. I told her I would need to research it first but it didn't sound like something I would want to do. The free samples of a new drug, huh? How about some free samples of GF/SF/DF Lara bars or a bag of spinach to help with those leg cramps? I'm really turned off by the idea of another pill that has even more scary potential side effects.

I'm willing to give it more heal time in hopes that I can shake the entocort permanently if I am that lucky. It's been a while and I know they will not agree my improvements are due to my diet so I don't even feel like going there.

Is there a good reason to try if I'm not having any new issues. IMO, I need to look more carefully at that handful of questionable foods I still eat.....

Post by **tex** » Tue Jun 17, 2014 8:58 pm

Deb,

Lialda is mesalamine, which is a derivative of salicylic acid, similar to NSAIDs. Back in 1998, Dr. Fine wrote an editorial that was published in the New England Journal of Medicine describing why anyone who is sensitive to NSAIDs runs a high risk of developing inflammation and diarrhea from mesalamine:

Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis

Tex

nerdhume · Post by **nerdhume** » Wed Jun 18, 2014 3:22 am

Deb, I was on Lialda for a couple of weeks and it made my WD worse. Then I started Uceris and it immediately stopped the WD. I took it for a couple of months then stopped cold turkey with no relapse. Uceris is supposed to mostly effect the colon and very little is supposed to get into the bloodstream. For this reason it doesn't have all the same side effects as the other steroids.
I realize we are all different, but Uceris might be worth a try.

DebE13 · Post by **DebE13** » Wed Jun 18, 2014 4:20 am

I was given Asacol when I was first dx with CC and all I remember is it wasn't good. I believe heavy use of ibuprofin was a major contributor to my issues. I used to regularly take six at a time for severe migraines, which ironically never offered any relief but I took it anyway out of desperation. To be young and uninformed...... Sigh. Having migraines often 20 days out of the month was hard to deal with. It's a shame no one ever mentioned diet. Although, at that time, I doubt I would have had the will power to eat like I do now. I don't get migraines anymore.

Thanks for the suggestion Nerdhume, I will keep that in mind. At this point, I'm not looking to change my meds because I would suspect the same- if I go off of either of the two meds the bad D will return. I'm just not ready yet. The nurse didn't understand my explanation of tolerable and bad D. I have tolerable D right now. 3-4 x in the morning, sometimes mud, an occasional Norman, all doable. Bad D is when it wakes me up at night or surprises me in my sleep, gurgling, catching me with no time react. Keeping the low dose of entocort keeps me in the tolerable range.

I know I have areas in my diet to look at but with the roller coaster ride of a year and a half of thyroid issues, I pushed that aside. I'm on my way though, the idea of eating beans or PB (even in my limited amounts) has become less appealing because I have more immediate reactions than when I was on higher doses of entocort.

CathyMe. · Post by **CathyMe.** » Wed Jun 18, 2014 4:48 am

Deb,
My GI doctor prescribed Lialda back when I was at my worst after Entorcort stopped working the second time she placed me back on it. From what I can recall, Lialda helped a little bit but not to the same degree that Entorcort did.

dfpowell · Post by **dfpowell** » Wed Jun 18, 2014 7:40 am

Deb,

If your doctor does discontinue your Entocort, you can get it rather inexpensively from ADC, then you would not have to worry about what they want vs what you know is best for yourself.

DebE13 · Post by **DebE13** » Wed Jun 18, 2014 11:00 am

I've always worried about the what-if-stops-working problem but decided it wasn't worth the effort. If it happens I will have to deal with it and now know some alternatives. I don't think he will refuse to continue my RX since I'm on such a low dose. At this point, I have excellent insurance coverage so it's a good choice right now. Hopefully I will work to the zero/day level and manage by diet alone.