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Long term use of rectal meds vs maintenance oral meds

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Posted 8/3/2011 10:36 PM (GMT 0)
Hi everyone,

After a bad flare that started in early May, I finally went and saw a GI who prescribed me some rectal meds (rowasa enemas) that I began taking at the beginning of July. They seem to help tremendously, with urgency and blood ending pretty much right away. I still have some occasional mucus and a tiny bit of blood here and there (happened maybe 5 times during the month), but nothing compared to 4-6 times a day like before.

I went back to visit my GI today. Told him that everything seems to be going great, and asked how I should taper off this stuff, etc. He advised me to start taking an oral med for maintenance for the rest of my life. He told me to contact my insurance company regarding the cost, and it turns out that all 3 (apriso, Asacol, and lialda) cost me over $100 out of pocket per month even with my insurance.

2 questions:
1. Is it worth $1200 a year to take a maintenance med, or am I better off just tapering and using rowasa enemas if my symptoms flare again (they cost me $15/month instead of $100+).
2. Before this flare I went almost 2 years without any problems. Why do I need to take a drug for the rest of my life?

Thanks to everyone for all the insight and information I get here. :)
Posted 8/3/2011 11:59 PM (GMT 0)
markb, I think Rowasa is a perfectly acceptable maintenance medication if you can manage your colitis with it. There is no reason you can't use Rowasa long term. You would taper down to a dose where you feel stable, some don't use them often at all, if you have symptoms, you would increase to using them nightly.

I don't know the extent of your UC so it is hard for me to give great advice. You said you had a bad flare, was it pancolitis? If your flare up was of the entire colon, the oral medications may help more to keep things at bay and they are also believed to be a preventative for colon cancer. People with UC are at an increased risk for CC. That in itself may be good reason to consider oral medication.

There are savings cards for a lot of these medications that can reduce your copay to much less than $100.

You can find info about these programs here: https://www.healingwell.com/community/default.aspx?f=38&m=1666318

Posted 8/4/2011 12:15 AM (GMT 0)
Where is your UC located? I assume it hasn't spread all that far if you were able to achieve remission with the enemas.

Personally, I think it's wise to use both oral and rectal meds to maintain remission; studies show that UCers who use oral meds daily in conjunction with enemas (rowasa) twice a week stay in remission longer than those who only use oral meds. I wouldn't just rely on oral meds for sure, since the enemas got you into remission, and since it seems that your UC is distal. The oral meds aren't all that effective at treating the distal portions of the colon.

I would definitely not just not take any meds. Sure, you had a good two years, but maybe you'll be able to go much longer before another flare if you take maintenance meds.  Also, I think that you were very lucky to be in remission for two years w/o using meds; studies also show that the 5ASA drugs keep UCers in remission for longer than those who do not take any drugs. Only you can decide if it's worth $1200/year to prolong your remission.

There are savings programs offered through the drug companies that can help you reimburse part of your co-pay, so definitely look into those. I think there are links in the "UC resources" thread at the top of the main page.
Posted 8/4/2011 12:57 AM (GMT 0)
Definitely use the enemas for maintenance. Oral meds (as already mentioned above) is dependant on your UC extent.
Posted 8/4/2011 8:34 AM (GMT 0)
The enemas should be tapered to a maintenance dosage...and the use of a low dosage of Asacol to start would also be good, or Apriso (since you're in the US and have it available).

What was he going to prescribe for you and at what dosage?

Yes, it's wise you use both, and when you flare again...up the enemas to nightly.

I've only used 5ASA oral and rectal for 22+ years...I intend to continue "forever".

q
Posted 8/4/2011 2:11 PM (GMT 0)
Thanks for the responses everyone. It sounds like the consensus seems to be:

1. I shouldn't stop taking meds all together, though rectal meds by themselves may be okay if my colitis is distal and that's what I can afford.
2. It's alright for me to use rectal meds indefinitely if needed.

Heather, I was offered Asacol HD, Lialda, and Apriso. I only know the dosage of Apriso, which is .375/mg 4x daily. The cost for the other meds is actually even higher, and it seems that they have to be taken many times during the day which is even more inconvenient than an enema at night.

Fruitgirl, I was originally diagnosed with proctitis so I assume my colitis is distal.

I guess I'll call the doctor today and see about just using the enemas as needed for the time being. If things get worse, I suppose I'll bite the bullet and find a way to make the cost of the oral ASAs work.

Anyway, thanks again everyone. Appreciate the support here.
Posted 8/4/2011 3:16 PM (GMT 0)
Hi Mark,
Just FYI...I have a Lialda card which I got by calling Shire Pharm. and I only pay $10/month for my prescription (I have insurance) I have distal UC (rectum and lower sigmoid) but I like the idea of an oral asa to try to prevent spreading (of course no guarantee). Lialda is only one time a day so very convenient. Just something to think about. I really believe in the "treating from both ends" approach...even when distal. Let us know how you decide to proceed. Wow, I sure used alot of parenthesis..lol.
B
Posted 8/4/2011 3:29 PM (GMT 0)
Rowasa enemas are superior to oral medication for maintenance even when you use them every third day for distal disease. It has a generic.

Colazal is available as a generic. It is a oral medication.

Combine both if necessary

My copay is $240 year generic v. $1250 brand name. So it pays to know.
Posted 8/4/2011 4:02 PM (GMT 0)
I have the Lialda card too. For 2.4g (2 pill) it is free or $10. But the benefit is capped at $120/mo, so for 3 or 4 pills I had to dig into my pocket. Four was like $100/mo even w/ card. Three (current dosage) is costing me $20, and the doc gives me lots of samples.

For me, Liada cleared up the right and transverse colon, but was not reaching the left or sigmoid. I started Rowasa. I think it is helping, but at 6 weeks, I can say it did not help "in a few days" as some have experienced.

I assume I will use 1.2g or 2.4g Lialda to maintain my right colon, and at least 2x weekly Rowasa to maintain the Left. But first, I actually have to get into remission. Bleeding is decreased and mucus is less, but actual stools still not forming, and there is tinge of blood several days a week, and mucus about 3-5x daily. Fortunately some urgency is gone - unless there is also gas. I am trying to eat only non-gassy foods.
Posted 8/4/2011 5:52 PM (GMT 0)
Hateuc, thanks so much for letting me know! My out of pocket price for Lialda would be 270 per month so it would be tremendously helpful if I didn't have to pay so much. "Treating from both ends" seems to be the approach the pros around here are using - including Dr. Quincy :) - so I'm sure I'd be well advised to take your suggestion. I tried looking for the coupon for $10 Lialda, but it seems it's been removed from their site.

AZyooper, thanks for the info. I just called my doc to request that I be able to get refills on the rowasa as needed since it only runs me $15/month.

DB, sorry that you're still having symptoms. Can I ask which brand of enema you're using? I started on the Teva and have since been given the Perrigo brand, which for whatever reason don't seem to be quite as effective. This may make a difference as the Teva brand literally seemed to stop my symptoms the very first day I used them.

Thanks again everyone, so glad I found this place.
Posted 8/4/2011 6:05 PM (GMT 0)
I don't think you should start tapering if you're still seeing blood. I would go at least a few weeks with NO blood or other symptoms before you start tapering. The enemas work great for me combined with Asacol! Whenever I get lazy with using them as maintenance my symptoms start coming back so I will be using them for the rest of my life.
Posted 8/4/2011 6:30 PM (GMT 0)
That's a good point Sara... how long do you think I should wait before tapering? Are you currently in remission using asacol and rowasa?
Posted 8/4/2011 7:40 PM (GMT 0)
I'm not a doctor, but I would wait at least 3-4 weeks with NO blood before tapering. I know they are annoying to do, but your symptoms may come back full force if you aren't completely healed before tapering. Did your doctor tell you to taper right now?

Yes, I'm in remission on asacol and rowasa. But, like I said, if I get complacent with the enemas and skip them for a couple weeks, it is inevitable that I start flaring again.

Glad you are improving with the rowasa!
Posted 8/4/2011 7:49 PM (GMT 0)
I waited until I had been in remission for about a month before I dropped to every other night. I stayed there for a couple of week, to make sure no symptoms popped back up, then I dropped to twice a week, which is my chosen maintenance dose.

And I'd also like to share this little tidbit: My first (and so far only) flare was really horrible....20+ terribly urgent BM's a day, I lost a ton of weight, and I had to use prednisone to get into remission. When I saw my GI after I'd been in remission for about a year, he said that he really thinks that I'd have flared again by then had I not been so committed to taking my meds. I just don't skip doses, period.
Posted 8/4/2011 8:32 PM (GMT 0)
I asked me doc the same thing.  I am taking Imuran for my entire colon and canasa suppositores for my rectum area to control the UC.  I ideally would like to take the rectal meds only and my gi doc has allowed me to taper my Imuran from 200 mg to 150 mg to 100 mg.  He stated at my last visit that the canasa is to keep my rectal area clean and keep the uc controlled but the imuran is for the rest of my colon.  We shall see how it goes.  In any event I suggest an oral med that be kept at a min amount like Q rec. or if not at min then rec. a gradual tapered down dosage.

MyUC

Posted 8/4/2011 11:06 PM (GMT 0)
Hi Mark,

Try calling Shire Pharm at 1888 227 3755 and ask them for the card as your insurance payments will still be very high.  It is def. worth the call....that is how I got it.  They send the card, you activate and than use it until it expires. It helps alot w/ the cost.  Now when it expires...well I'll worry about that than. 

Just FYI, I also use Perrigo (used to use Teva but the pharm told me it was discountinued)  The Perrigo does the trick for me, but when they gave me Gavis brand enemas...they didn't work as well.  I'm not sure why, but if Perrigo doesn't do the trick and you can't get Teva, why not try Gavis? Since everyone is different, these may work great for you.  Like Q always says..sometimes you have to experiment.  I use the Perrigos every other day and on the days I don't use them...I use Canasa (mesalamine suppositories).

I also learned about the treating from both ends from this forum and I think it is the way to go.  UC really sucks and I want to make sure I have all my bases covered.  Hopefully I can prevent alot of aggravation in this area by using this formula.  I've had to really change my attitude about taking the meds, but I tell myself that it is not such a big deal and it is just like taking a vitamin.(especially w/one time a day Lialda)  I still roll my eyes sometimes when I have to take it, but than I move on.  Good luck w/ everything and keep us posted.

B

Posted 8/4/2011 11:15 PM (GMT 0)
Um, I honestly wouldn't try the Gavis. I had used Perrigo for two years, then due to an insurance change, which meant a mail order pharmacy change, I got a shipment of Gavis enemas. I started using them about two months ago, and noticed that the tips of some of them are rough. I never had that problem with Perrigo. I also ended up with a perianal abscess and had it drained on Monday...it was a less than pleasant experience. I wondered if the rough enema tips could have caused it, and sure enough, a google search turned up several seemingly reputable websites that listed "enema tip abrasion" as a cause for perianal abscesses.
Posted 8/4/2011 11:35 PM (GMT 0)
Wow, fruitgirl that is very interesting. I guess I am glad that they didn't work for me after hearing your story. Ok, Mark I take it back....don't go w/ the Gavis. I never noticed the rough tips but I didn't use them too long before realizing that they weren't working as well for me. I just thought it was one of those things that work for some but not me. Hmmmm, does any other company make these enemas?
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