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Should I start tapering Rowasa?

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Ulcerative Colitis
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Posted 5/3/2017 3:36 PM (GMT -5)
I have been using rowasa since late November. Since then, I’ve been having 1 bm per day. Sometimes every other day. Things are mostly formed, but sometimes broken up. No blood. Im still having minor symptoms like gas or slight discomfort. Recently I forgot to do rowasa some nights. The next morning my bm was a perfect s shape! This makes me think that perhaps rowasa is what’s causing the discomfort and softer consistency. Because of this I am considering tapering to reduce frequency, but not discontinue. I could alternate it with canasa. Does this sound like a good idea?
Posted 5/3/2017 4:17 PM (GMT -5)
to me it sounds like a great plan -

even normal type folks have gas/digestive issues -
Posted 5/3/2017 4:19 PM (GMT -5)
If you've been in a solid remission for 3 or more months than it's perfectly reasonable to go from nightly rowasa to every other night. Cautious is best. Stay at every other night for at least 3 weeks before considering any further drop. Many can do without rowasa when in a remission. It's just no rush to that eventuality.

Sometimes we can drop rowasa frequency but not always (rowasa can be a nightly maintenence treatment).

All you can do is try and if necessary up the dose should you see a regression within your symptoms.
Posted 5/3/2017 7:00 PM (GMT -5)
What oral mesalamine are you using....and are you off the pred?

q
Posted 5/4/2017 9:13 AM (GMT -5)
I have been off pred since September. Im not currently taking any oral mesalamine for around three months. I was on lialda for a couple of months but noticed it gave me gas and bloating. My GI is ok with me discontinuing it. In the past I was never able to achieve remission while on an oral mesalamine, asit gave me side effects similar to colitis symptoms. My remission was achieved with canasa and rowasa...
Posted 5/4/2017 11:30 AM (GMT -5)
Were you using rectal meds while on Lialda?

q
Posted 5/4/2017 12:07 PM (GMT -5)
If you're not taking an oral mesalamine then i wouldn't taper down rowasa at all. Nightly rowasa is your maintenance treatment. Rowasa tapers are for those who are in a remission and on oral mesalamine.
Posted 5/4/2017 12:15 PM (GMT -5)
Yes, I was on rowasa and lialda at the same time.

I guess my issue is that I'm not able to distinguish side effects of rowasa and colitis symptoms, so I don't know if im in remission or not.
Posted 5/4/2017 12:37 PM (GMT -5)
What was the dosage of Lialda? And how long on Lialda AND rowasa at the same time?

q
Posted 5/4/2017 12:44 PM (GMT -5)
HI Katerina,

Rowasa can cause gas and can make your stool a bit more watery because of the increase in liquid, but these seem like side effects from the meds and not a UC flare if you have 1 BM with no blood or a lot of mucous. That is how I see it. The stool is also covered in white/off white in the AM, which seems like mucous but is just the rowasa. It does the same for me. Keep a written log of symptoms and what you are taking. One day of good BM does not mean anything in terms of the rowasa being a problem. You want to look for more consistent patterns overtime.

Order stool tests to check on your inflammation if you don't have a colonoscopy scheduled soon. You sound like you are in symptom remission, but i would want to make sure there isn't simmering inflammation before tapering meds. I thought i was in remission (1 formed BM per day with no blood for 2 months postflare) and then SURPRISE my scope showed mild inflammation in the rectum a few weeks ago. I added rectal meds after this and stayed on the balsalzide despite annoying side effects. i was ready to move on though and celebrate. Symptom remission is really what is the most important for me overall, but I like to check on things more objectively too.

Post Edited (Jane974) : 5/4/2017 11:56:27 AM (GMT-6)

Posted 5/8/2017 3:19 PM (GMT -5)
Thank you all for the replies!

I've been on Rowasa and Lialda for 3 or 4 months. The dosage of Lialda started at 4 per day. Eventually I stopped taking it.

This weekend was my birthday and I ate a lot! I think I will hold off on tapering for now... Starting to feel like things could go the wrong direction after all that eating...
Posted 5/8/2017 11:42 PM (GMT -5)
Happy belated birthday!

🕯🍰🎈

q
Posted 5/16/2017 8:56 AM (GMT -5)
Hi all, I have some new developments in my condition... For past couple of weeks, some days I have been forgetting to do Rowasa. Everything was great, but not for long. Yesterday, I noticed a little bit of blood on tp. I thought it was nothing at first, but this morning it was there once again, this time with mucus. I'm not sure why this is happening, I've been doing Rowasa for 6 days straight now. I am going through a cold, so maybe it is related... I'm really scared now, I didn't have blood since September. Is there anything I can do to help stop the flare? Maybe add probiotics? I have my GI appointment next Wednesday... I am suppose to be going to Europe in the beginning of June, so this is a very bad time for things to get worse. Ahhh I really hate this disease!
Posted 5/16/2017 10:12 AM (GMT -5)
I'd continue doing nightly rowasa and see if you bounce back. You've got some time until next Wed and the doctor's appointment. Seeing a tiny amount of blood on tp isn't a huge worry. It means there is a limited amount of active inflammation of a likely very mild severity. If it was severe, then you'd be much, much worse.

I'll occasionally see a little bit o blood on my tp, perhaps once every 3-4 weeks. I know mr bowel isn't quite yet in a happy remission state, and reminds me that I'm not there yet with a bit of a red flag... sucks.
Posted 5/16/2017 11:34 AM (GMT -5)
It sucks indeed. I have some corticosteroid suppositories so I might start doing them if things get worse... Hoping its noting, like you say.
Posted 5/16/2017 11:56 AM (GMT -5)
Use the supps during the day and enemas at night.
Absolutely get on probiotics if yiu arent already anyway.

Get on another oral mesalamine....try apriso.


Stay on the meds continually through your holiday and consider tapering once you get back.

Throw in a period and stress of illness and preparing for holiday.....stay consistent.

Ask your doc to check with a rectoscope to see if you have a fissure possibly if your inflammation is very, very mild.

If you skip..only do it for a night, not nights in a row.

Let us know how the appointment goes.

q
Posted 5/19/2017 1:54 PM (GMT -5)
Hi all, I have an update. Yesterday and today I kept seeing blood - forgetting to do rowasa the day before surely didn't help! This morning thing's weren't looking good, with loose bm with mucus and some blood. I managed to see my GI today. He didn't seem that concerned, as usual. Told me to do canasa in the morning and rowasa at night. I reminded him that I have a history of pancolitis and he told me to start taking 2 lialda... I asked for steroid supps, but he said its not needed. He knows I have a supply of cort enemas and supps, so he told me to see how it goes and pretty much decide myself based on how I feel... So based on this, my plan is to do canasa and rowasa, Im not decided about lialda yet, it never helped much anyway. Its looking more and more like my Europe trip is not happening...
Posted 5/19/2017 5:23 PM (GMT -5)
I'd take lialda with a history of pancolitis. The enemas don't reach the entire large intestine, just the left side.
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