Maintenance - Rowasa, Canasa, Lialda, VSL

Two schools of thought. Some GIs say you can reduce your medication while in remission. Others say do not reduce your medications even while in remission (except for pred which you obviously can't take long term).

Well, a maintenance dosage of oral meslamine for uc is considered to be 2,400mgs a day (or two Lialda tablets) according to most of the literature. Whether you can stay in remission with that dosage is another thing entirely.

Yes, Rowasa can often be tapered down to once or twice a week while in remission. Whether you can stay in remission with that dosage is another thing entirely.

Just don't change too many things all at once, as you will have no idea what worked. Try one thing at a time, give it a few weeks, check for any signs of things getting worse. Use caution, take things slowly and only with consult with your GI. Remission is a prize and flares are hell, so you don't want to risk loosing it by doing things too quickly, or without being smart about the process. Good luck,

I wouldn't taper anything until you've been completely symptom-free for a while. Just 2 Lialda a day is a pretty low dose, so I'd be hesitant to do that.

I'm actually using one enema and one Canasa a week. I got a script for Canasa filled shortly before my daughter was born, because I was worried about the logistics of retaining an enema if I was up a lot at night with a newborn. At any rate, because I have them and I don't want them to go to waste, I'm using them once a week. However, I wouldn't do this until you've been stable on twice-weekly enemas for a while, either.

Thanks fruitgirl. The only time I have blips is around ovulation and my period (stool a little softer, maybe one more time a day for 2 days). During that time I take an enema maybe 2-3 nights in a row til it calms down. But after speaking with my GI he said I don't even need to do that.

For the most part I am down to 2-3 nights a week on average and things are good. Things have been stable since November and I am just connecting the loose stools to my hormones. I wanted to see if I could taper Rowasa to one night a week and add the Canasa in another night. I just started randomly using Canasa a couple weeks ago to see if it will help with my hemmie. And it actually does help.

I guess I will do a couple weeks of 2 nights and then drop one and add Canasa and see how things go.

I wanted to start with the rectal taper make sure things are stable and then do the VSL. Have you ever tapered a probiotic? I just feel like 2 packets of DS is so much. I would like to do 1 in remission and then be able to up to 2 in a flare. I couldn't handle more than 2 I don't think. All of this of course needs to be discussed with my doctor but I like having a plan before I go in.

Not sure I will ever try dropping the Lialda. I don't see too many people on here using only 2 pills...to be honest sometimes my head makes me think that being on the maintenance does while in remission will be better for my body...

I've never tapered a probiotic, but I've never used one as strong as VSL#3. I didn't learn about it until I was in remission, so there's never really been a reason to. It's on my "to-do immediately" list if I ever start flaring again, though!

quincy, no, since I was using a Canasa instead of using an enema, I didn't see a point in tapering. I mean, I'm still getting a rectal med twice a week, just like I was before. I've been doing it for over a year now, so it's obviously OK.

Thanks quincy. You made a comment - "Supps serve a purpose, but that would truly depend on how high your inflammation tends to get before you feel any symptoms."

So does this mean my disease will always go up to almost the transverse? That my body will always have that whole area as possible inflammation? I've seen people on here go from proctitis to pancolitis, but does it ever go the other way around where someone starts of left-sided and one day only have proctitis?

I will heed your warnings and stick to 2 nights a week on the enemas. I am going to throw Canasa in there most likely in the morning and do a Thurs/Sun routine. The Canasa has helped me not feel sore from my hemmie and the hydro supps really really irritate my "hole".

Periods SUCK. Its the only thing that gives me issues at this point.

Do you have any input on the VSL? Can I drop it?

I actually just spoke with my GI about getting the Mirena right after baby 2. I misscarried (wasn't trying at all) in January and we are going to try at the end of the summer.

We both think it will help regulate everything and hopefully stop the ups and downs during those times of the month.

I'm so sensitive to birth control. It makes me nervous. But at this point if it help I will do it.

So does this mean my disease will always go up to almost the transverse? Not necessarily, if you are able to go into remission than all of your inflammation will be gone. That my body will always have that whole area as possible inflammation? No, inflammation can spread further and it can also reduce to cover less. I've seen people on here go from proctitis to pancolitis, but does it ever go the other way around where someone starts of left-sided and one day only have proctitis? Generally one's uc disease is clinically classified by the maximum extent it has reached; if it has reached the sigmoid then it is classified as proctosigmoiditis even if today's exam or symptoms suggest there is a lot less inflammation present. But as I said, remission means no inflammation within your large intestine so there is hope.

My GI told me I could taper down to 2 Lialda a day after having been on the 4 a day for a year (I was originally diagnosed left sided as well) I did taper the rectal to 2-3 times a week though pretty quickly. Now the minute I feel the slightest bit off I up everything. I never decrease my probiotics but I do increase them when I need antibiotics.

IMHO, I have always, and will always stay on 4 Lialda a day. I posted a 5 year study a few days back stating that 4800g of 5-ASA's a day has shown in studies to have a 89% rate of lowering the risk of cancer substantially in patents.

Just sayin'

found it:

The only thing it doesn't specify is what "over time" means. they say 5068 grams....over what amount of time??? I will assume it means to take a maximum dose of 4.8 g, and I ain't cutting mine down!

......................................
" Additionally, a recently published study has identified the severity of microscopic inflammation over time as an independent risk factor for colorectal cancer among patients with ulcerative colitis. Conversely, adherence to prescribed 5-ASA/mesalamine therapy may afford protection against colorectal cancer over time. A pooled analysis performed by Velayos and colleagues supported a protective effect of 5-ASA/mesalamine against colorectal cancer or a combined endpoint of colorectal cancer and dysplasia among ulcerative colitis patients. In work presented at this year's ACG meeting, Tang and colleagues reported as much as an 89% reduction in colorectal cancer risk among patients whose cumulative 5-ASA/mesalamine dose equaled or exceeded 5068 g."
.......................................

Scott - thanks for that article excerpt. Stinks there is no time period or weight noted. I never plan on stopping my 5 Asa's as long as there are no complications with them.

Quincy - No worries on the miscarriage. I wasn't ready and it will happen at the right time when its the right time :)

I will never go off rectals completely. But when I asked my GI about the issues with my period he said he thinks I get IBS symptoms with the hormone shifts and that it wouldn't lead to an IBD flare. Is this not something you agree with? Also can I get your opinion. As I taper the enemas what should I be looking for if I am going too many days in between?

I tried Apriso with 6 mp and Pred and I couldn't get into remission. The 6 mp messed up my liver levels and before we talked Remicade I asked my doctor for one last round of Pred and 4 pills of Lialda. That did the trick. Is it worth switch from Lialda to Apriso at this point? When I was on it I had no side effects and it was easy to take. I know its a lower dose of mesalamine with a different dispersement mechanism.

You also stated this: Because you have "almost" pancolitis" you should stay at the 3600mg for a long while. I would encourage you to possibly consider the Apriso.

When I was diagnosed via c scope and biopsies in Nov 2012 the GI said I had moderate left sided colitis. Granted this was 4 weeks after the birth of my son and I was insanely ignorant to the disease. I asked the GI about breastfeeding on mesalamine and he couldn't give me a straight answer (I now know more than him and he is no longer my GI). So I messed around with the meds and got really sick and landed in the ER in March. They did a catscan and told me I had almost a complete obstruction and started talking surgery. I threw them out of my room and asked for the GI on call (still my GI to this day - he loved my horrific attitude at the time I guess :)). He said the scan showed inflammation almost up to my transverse.

You stated above that I almost had pancolitis? I thought pancolitis goes thru the transverse down the ascending and into the cecum (the whole colon). Is that not the case?

LOVE learning.

periods release endorphins that affect the colon...most women will have gastro symptoms of some sort. I wouldn't call it IBS, however.

Right, pancolitis is throughout. I should have reclarified....depending on at a microscopic level if there was any hint of cellular changes or inflammation including the cecum (although not visible). That would be a concern regarding decreasing too drastically or quickly. If all has remained unremarkable in those areas, and you've had improvement in the descending...only consider a drop to the 3600mg.

Remember that Lialda is 1200mg per pill. It's a drastic drop in one dosage. Any decrease for the 400mg Asacol, my doc cautioned me to not drop more than one pill a week or two.


But, your entire descending colon has been affected, so you'd be wise to have that area kept as calm as possible. If you've been on 4800mg and it's helped, don't go lower than 3600mg is only my suggestion.

Just to throw crap into the mix....my doc always started lower and increased. Most doctors start high and decrease. So, if one has med-related symptoms because of too high of a dosage, that's an issue. If you improve and do better on the 3600 and show healing while on that....it's your optimum level and you might be able to decrease.
You didn't do well on the Apriso for healing, but it might be OK for a maintenance eventually. But again...you have done best on the Lialda , maybe because your PH level is optimum for that medication.

The thoughts can go on and on.....

Do you split the dosage or take them all at one time?

Regarding tapering enemas, this has been my schedule as per my doc/my symptoms. Nightly enemas for however long needed. Once in "remission"...in other words...no symptoms, wait another week and go to every second night. Do that for at least 3 - 4 weeks. If all remains unchanged and you're approaching your period, remain another week on that schedule. If all is good, taper to every third night. Remain there for a long while. If you've been through a few periods, all is good, then do the twice a week. Stay there.

I used to go to once a week...even longer, always flared, back to square one. That included after I had a hysterectomy. For a long while, I couldn't get past the every third night....stayed there. Eventually got to every fourth, every fifth, back flaring..

It's your butt that rules the dosage, and it's not a failure if you can't get beyond a certain maintenance dosage. What you can do if you prefer to lower the dosage is go from 4g to 2g enemas.

I'll leave it there and wait for more questions..lol. My brain isn't yet in a good place after the death of our cat at 20 years...

q