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Stopping mesalamine after remission?

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Ulcerative Colitis
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Posted 9/26/2014 11:57 PM (GMT 0)
Hey all,

In 2007 I was diagnosed with mild UC. Luckily a course of prednisone with mesalamine put it in remission fairly fast. It's been 7 years since then and I've been taking mesalamine daily all that time. Since then I haven't had any significant issues or even dietary restrictions. I've been more or less normal except for very occasional and controllable urgency and the daily pills. Unfortunately for various reasons it's becoming a bit of a financial burden.

Does anyone have any experience with eventually stopping medication after being in remission for so long? The prospect of taking these basically forever is not a happy one...
Posted 9/27/2014 12:01 AM (GMT 0)
Sure people have stopped them, and then they have flared. I am on mesalamine both oral and rectal and I will never go completely off of them. I have been in symptomatic remission for 3 1/2 years. Have your tried decreasing the amount you take? That is what I would do first and see how you do.
Posted 9/27/2014 12:15 AM (GMT 0)
You are a first poster here so you haven't followed the board. I can't tell you how many times someone posted on here saying they quit their meds and their flare not only came back worse than before but what worked before won't work again next time. So, you wind up going on harsher and harsher meds that are more expensive and fight the disease worse than you did before. You are better off taking the safer meds forever than stopping and going through all that. Count your lucky stars that you have been doing this well for this long. Have you ever heard the expression, "If it ain't broke, don't fix it"? I wouldn't even decrease your meds because you are just asking for trouble. UC is never cured. It is hiding constantly in the dark behind the bushes just waiting for you to get lax and then wham! You will be very sorry.
Posted 9/27/2014 12:38 AM (GMT 0)
I agree that stopping your Meds could open a whole can of worms. What Mesalamine are you on? I am wondering if there is one that is substantially cheaper.
Posted 9/27/2014 2:53 AM (GMT 0)
There are oral mesalamines that are generic. I take balsalazide and sulfazine and my monthly bill for these is less than $20.
Posted 9/27/2014 3:26 AM (GMT 0)
hey don't -

i have been off meds since ........... i don't know ......... a while anyway turn

when was the last time a doc or someone really important looking, had a peek up your hooter ?

mesalamines are basically an anti-inflammatory that has been magically convinced to release in a special place in your colon -

if i were you (and i kinda were actually) i'd have a plan in place before making any med changes - an anti-inflammy diet would be a good start -

have a talk with your doc , assumming if you have one, and try to get a scope scheduled -

and then as sheri said, start out by reducing and giving that a ride for a bit - then go either way from there -
Posted 9/27/2014 4:16 AM (GMT 0)
Thanks for the replies all, kinda exactly what I expected. It's certainly not a decision I'll make lightly (or without consulting my doctor of course). I'm on Lialda right now and thanks to the way my insurance plan works it runs me ~$300 a month. It's not a great plan for expensive lifelong medicines unfortunately...

@kazbern I don't know how I had never heard of those. Thanks for the tip, I'll definitely be asking the doctor about that.
Posted 9/27/2014 2:00 PM (GMT 0)
I spent 10 years taking name brand mesalamines so I feel your pain!
Posted 9/27/2014 9:18 PM (GMT 0)
Don't stop! Better to pay for the 5-ASA medicine that your body accepts than to risk flaring + having to "step up" to stronger UC meds. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/28/2014 11:34 AM (GMT 0)
Do not stop your prescribed uc medications as clearly they are working. We have a resources topic at the top of the topics list that has various patient assistance programs. If you are taking a brand name meslamine and cannot afford it, then ask for a prescription of the generic Sulfasalazine (unless you have a sulfa alergy). It's an older uc medication that breaks down into meslamine in your gut.
Posted 9/28/2014 2:16 PM (GMT 0)
I just spent over a year in perfect remission with no symptoms at all. My insurance company decided that they no longer were going to cover my one pill a day lialda. After three days on the substitute i started flaring! My doctor was nice enough to supply me with a good quantity of lialda for now, but its been about three weeks and im still struggling with random symptoms at unexpected times. Its way easier to stay in remission than stop a flare! My pharmacy wanted $600 for a months werth of lialda. I will be looking into getting a different insurance policy because this really stinks!
Good luck in whatever you decide.
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