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Anybody take Rowasa permanently -- as in every day long term??

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Ulcerative Colitis
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Posted 6/4/2009 12:26 PM (GMT -5)
Hi. I've been reading this forum for awhile and finally decide to sign up and ask a question I have:

Does anybody take Rowasa everyday always (either permanently or for very long durations)? The reason I ask is on the box it says a course is typically 3-6 weeks until the flare subsides and remission is reached.

I've been on Rowasa everyday for about 5 months. It seems to help control my problem (which isn't too bad to begin with - mainly daily red toilet paper). However, as soon as I taper, it immediately gets worse.

My Dr. seems to think there's no problem with staying on rowasa, but curious if anyone else has experience with this. (I've also found doing 1/2 the bottle in the morning & 1/2 bottle before bed helps, though not always practical with the 1/2 hour of laying on my side). Too bad there isn't a stronger form of Rowasa. (Anybody take Canasa mornings and Rowasa at night??)

My only other med is Asacol (6 per day) - any more seems to make it worse. I don't want to do immune-suppressant or steroids since my problems isn't too bad, though perhaps switching the Asacol to Colazal would be worth trying, however. (just concerned about the extra fatigue/side-effect issues)

Anyhow, just curious if it's unusual/problematic to stay on daily Rowasa all the time.
Posted 6/4/2009 1:42 PM (GMT -5)
the GI doc that i went to @ Mount Sinai recommended that i take rowasa everynite..

i havent been too compliant with that though..

but i usually do it afew times a week.

 

Posted 6/4/2009 4:38 PM (GMT -5)
Hi. My GI is the same way. He always tells me to taper off of it and then completely stop it, but I don't understand why and I don't listen to him, because when I do completely stop it for more than a few weeks, I end up bleeding again. I think I have used it daily for about 3 months at the longest. I really don't know, but I would think that using rowasa long term every day would be less harmful than the Asacol since it is administered right to the area affected. I really don't know though.
Posted 6/4/2009 9:55 PM (GMT -5)
Rowasa is slower-acting than the steroid enemas so we pretty much HAVE to stay on it nightly for a couple months or more during moderate flares, if we want steady progress toward remission. I used Rowasa successfully off & on for over 12 yrs, but had a bad reaction to it (generic) during my most recent flare-up of UC in March. My gastro declined to comment except for agreeing that I should stop using it-- so I assume that's just another thing that can go wrong for us at some point in our own UC history. It does contain sulfite preservatives that can be problematic for some patients. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 6/4/2009 10:22 PM (GMT -5)
Thanks for all the replies. Looks like it's probably ok to stay on it long-term then every night. I'm about done with my first batch of 24 boxes (6 months straight, 1 every night). I suppose it's working to control it, so I'll stay on it. Probably time to trying switching the asacol though, never seemed like that did anything for me (perhaps Colazal). Or maybe first I'll try adding Canasa in the morning, in addition to nightly Rowasa.

Post Edited (bluejean54321) : 6/4/2009 9:25:17 PM (GMT-6)

Posted 6/5/2009 6:34 AM (GMT -5)
Yes it is safe to remain on Rowasa or even Canasa long term. In fact, that is one of the main treatments for people that have UP. I have a suggestion though, after things start to look good again, what if you were to alternate your nights with Rowasa and then Canasa? Try to do the taper that way? Maybe if you can tolerate the alterating nights then slowly go onto strictly the Canasa? What is the extent of your Uc btw?

Oh and welcome to Healingwell and thank you for joining us! :)
Posted 6/5/2009 7:30 AM (GMT -5)
I use Canasa morning and night. One of my doctors said it is fine for long term use, the other said she doesn't usually have patients take it longterm. I don't see why it would be a big deal? it's pretty much just a topical treatment as far as I know. Better to use it than to be sick.
Posted 6/5/2009 12:45 PM (GMT -5)
Hi bluejean..welcome to the forum!

What dosage of the Rowasa are you on? 2g or 4g?

How much of your colon is affected...throughout or limited?
q
Posted 6/5/2009 1:46 PM (GMT -5)

The longest I've been on Rowasa nightly was about a year and a half.  My doctor feels if that is what is keeping you in remission than why not stay on it?  You can definitely do Canasa in the morning and Rowasa at night.  I actually did that for a while.  Then as Red suggested you can try to alternate canasa and rowasa. 

If your UC is limited to the lower areas you might be better off with Colazal as it tends to reach further down than Asacol.

Posted 6/5/2009 5:57 PM (GMT -5)

quincy said...
Hi bluejean..welcome to the forum!

What dosage of the Rowasa are you on? 2g or 4g?

How much of your colon is affected...throughout or limited?
q

Many thanks again for all the replies. Quincy: I am on the 4g (60ml) Rowasa, which I've taken every night for about 6 months. It worked really well after 6 weeks (to the point I finally had normal colored toilet paper for the first time in a year), so I gradually started to taper. It immediately came back and, after continuing it for another 4 months, it's no where near where it got after those first 6 weeks That's pretty much the reason for my question, I thought maybe with Rowasa there's a point of no return type thing.

In general my problem isn't too bad (8 inches, rectosigmoid). Since supposedly Rowasa works best immediately after going to the bathroom, I've started trying using 1/2 bottle in the morning, and the rest before bed. However, I think I probably need something a bit more.

Mamas Boys said...
If your UC is limited to the lower areas you might be better off with Colazal as it tends to reach further down than Asacol.


I didn't realize that. Is that just something people find to generally be true from experience, or are there by chance studies that have shown this??

Post Edited (bluejean54321) : 6/5/2009 5:25:26 PM (GMT-6)

Posted 6/6/2009 10:08 PM (GMT -5)
Colazal has been found to work better for lower left-sided colitis due to the release mechanism of the medication.  Give it a try it might just be the boost you need.

Posted 6/7/2009 12:31 AM (GMT -5)
bluejean...I don't know if there's a point of no return.....maybe there's been no testing on that part becasue those who have success with 5ASA enemas are able to taper to their maintenance dosage. Some are able to taper off completely and use them for flares and taper then off again. I'm not one since the second year of diagnosis.

I do know of another UCer who sees my doc who was (last year) using the Pentasa enemas nightly for a year and had the OK of my doc to continue to do so (he mentioned that most people would never even want to consider using rectal meds any longer than necessary, but worth a try if she's wanting to do it). I don't know what strength the dosage was or if it even comes in 2g/4g. I've lost touch with her and don't know how she's doing, so can't offer anything more on that.

What I would suggest, however, is to maybe start using the 2g nightly to see if you improve.  Maybe 4g is too high for you nightly and you're slightly sensitive to the 5ASA in a high dosage (I'm considering that from your mentioning that the Asacol higher than 6 daily ws too much).

When you insert the med....are you laying on your left side?  You might want to sit up or lay on your back to keep most of it lower in the rectum. 

q

Posted 6/7/2009 11:25 PM (GMT -5)
I have left-sided UC with sigmoid area usually the most problematic; Colazal (name-brand) has been my most effective 5-ASA med to-date. (But Watson Pharma generic balsalazide made me sick!) I would also recommend that you try it because it dissolves farther into the colon than the other oral 5-ASAs. (Probably more sophisticated imaging techniques have enabled researchers to determine WHERE these meds begin acting against inflammation-- in the last 10-12 yrs.) RE 2 oz. Rowasa-- I have never encountered less than 4 oz. bottle in the U.S. It's about half a cup of liquid if you manage to squeeze every last drop out-- not really that much, it just feels like a lot rolling around in the left colon. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 6/8/2009 11:13 AM (GMT -5)

quincy said...

What I would suggest, however, is to maybe start using the 2g nightly to see if you improve. Maybe 4g is too high for you nightly and you're slightly sensitive to the 5ASA in a high dosage (I'm considering that from your mentioning that the Asacol higher than 6 daily ws too much).

When you insert the med....are you laying on your left side? You might want to sit up or lay on your back to keep most of it lower in the rectum.
q

Thanks for the reply. I'm always lying on my left side when inserting the Rowasa (and then staying laying on my left side for a 1/2 hour). I'll try sitting up as you suggested - it makes sense and worth a shot. If that doesn't work, I'll experiment with just 1/2 or 3/4 bottle.

Old Hat said...
I have left-sided UC with sigmoid area usually the most problematic; Colazal (name-brand) has been my most effective 5-ASA med to-date. (But Watson Pharma generic balsalazide made me sick!) I would also recommend that you try it because it dissolves farther into the colon than the other oral 5-ASAs. (Probably more sophisticated imaging techniques have enabled researchers to determine WHERE these meds begin acting against inflammation-- in the last 10-12 yrs.) RE 2 oz. Rowasa-- I have never encountered less than 4 oz. bottle in the U.S. It's about half a cup of liquid if you manage to squeeze every last drop out-- not really that much, it just feels like a lot rolling around in the left colon. / Old Hat (30 yrs with left-sided UC ... [etc.])

Thanks for the suggestion. It looks like Colazal will be my next step. As "Mamas Boys" said the same thing, I had no idea it reaches lower down for people with sigmoid area problems. I think the 4oz Rowasa is working well for me, but I just need a new oral. I've been lucky in that I've never had any problem applying and retaining the Rowasa all day/night, and it's always worse if I miss a day.

My only concern with Colazal is the fatigue issues I've heard about, though I guess I'll start with a low dose and see how it goes. Thanks for the feedback - I'll also make sure to get the name brand.
Posted 6/8/2009 11:17 AM (GMT -5)
I haven't noticed any fatigue issues with colazal.  The fatigue from flaring was always much worse.

Posted 6/10/2009 5:18 AM (GMT -5)
I have been on Rowassa and its generic form for about 10 months now using it nightly in conjunction with my other meds in the morning. I have been in remission for about 8 months and think it is the only way for me to stay in remission and feel normal. I can lead an active life pain free for the most part just by using it nightly. It is important keep it near your bedside so you remember to put it in even if you are too tired. Just stick with it and don't taper because you will end up having to do it all over again. Ask your doctor but mine says it is fine as long as I'm not flaring. It is better than steroids I know that much.
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