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Switching to another 5-ASA

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Ulcerative Colitis
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Posted 1/10/2012 10:25 PM (GMT 0)
I'm thinking about going to see my GI about switching from Salofalk to another type of 5-ASA, but I don't know which one. Salofalk worked perfectly fine for me until my flareup several weeks ago, and now it doesn't seem to be helping at all. What changed?

If my UC is left-sided, should I ask him for colazal, apriso or pentasa? I don't know which one of these meds are the most effective for my type of UC. I also don't want to try lialda since I keep hearing about its hair thinning side effect.
Posted 1/10/2012 10:30 PM (GMT 0)
take a round of predinsone for a month taper and get back on the salofalk like you were before. I've read people on here doing this...maybe it will work for you.
Posted 1/10/2012 10:30 PM (GMT 0)
I also forgot to mention that I want to avoid prednisone for as long as I can. I don't think my UC is that bad.

Post Edited (Max89) : 1/10/2012 3:36:07 PM (GMT-7)

Posted 1/10/2012 10:36 PM (GMT 0)

Max89 said...
I also forgot to mention that I'm not taking prednisone either. I'd rather have my colon out that get started on that path. I just don't think my UC is that bad.

I think you've heard or read too many bed time stories about prednisone. It's not poison, you can use it from time to time. Of course if you use it continuously, it will become dangerous.
Posted 1/10/2012 10:41 PM (GMT 0)
Are you in Canada? I don't think Colazal would be an option for you from what Canadians have posted here in recent yrs. Pentasa is more of a right-side med. Apriso started out as a maintenance med in the U.S., but is being used more frequently to treat flares; the question would be whether it is available if you live outside the U.S. I agree with you about wanting to subdue your flare w/o resorting to Prednisone. If your inflammation is confined to the left colon, you do have the option to use steroid retention enemas, which are stronger than 5-ASAs but not as potent as Pred. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/10/2012 11:10 PM (GMT 0)
Max, are you using rectal meds at all?

When I flared up while on Asacol, I tried Colazal, and Lialda at the max dose and they didn't help me. I am not trying to discourage you but letting you know that it's not always the answer. I do recommend trying other 5ASAs. Many do well on Pentasa but as Old Hat mentioned, it's more for inflammation higher up. It's used a lot for Crohn's Disease. If you don't want to use prednisone, you could also opt for entocort. You could also try 5ASA or steroid enemas. If you don't respond to another 5ASA, you should try to figure out what your next step will be. My flare up was very severe, I had to take prednisone and even with pred, it took months to get it fully under control. I don't think this is common to have so much trouble, many people are able to take a short corse of pred and get on with their lives.
Posted 1/11/2012 12:34 AM (GMT 0)
I'm not on any rectal meds at the moment. If I go for 5-ASA enemas, will I have to use them indefinitely or just until the flare subsides? Also, how long would I have to keep the enema inside the colon?

I'm a little afraid of enemas since I've had bad experiences with them when I had to use some for my colonoscopy. I can't imagine how it would be like to have to use them regularly for the rest of my life.

Old Hat: Yes, I'm in Canada. Isn't Apriso available here either?

Post Edited (Max89) : 1/10/2012 5:39:39 PM (GMT-7)

Posted 1/11/2012 12:46 AM (GMT 0)

Max89 said...
I can't imagine how it would be like to have to use them regularly for the rest of my life.
?

If I had to use an enema for the rest of my life, I think it would drive me insane and I'd lock myself in a mental institution. I don't plan on riding with this disease for the rest of my life. I'll get rid of this disease one way or another.
Posted 1/11/2012 12:54 AM (GMT 0)
That really isn't helpful in any way. Can someone else please answer my question? :(
Posted 1/11/2012 12:57 AM (GMT 0)
The enemas that you use for prepping are totally different from the ones you use as medication. The ones we use for medication are much easier to retain and they don't cause much discomfort. I have a friend who is able to use them as needed but some of us use them more regular to maintain remission. I usually use suppositories because I find them easier but enemas treat a larger area and offer a higher dose. I find that I may be uncomfortable for a few minutes after using it but then I go to sleep and it's not an issue.

I did fleet enemas before my recent scope and I couldn't retain that for 10 seconds.

The foam enemas dissolve into practically nothing in the rectum.

Posted 1/11/2012 12:58 AM (GMT 0)
Max- Many people use them (enemas) only for flares and can stop. Research does show that remission last longer for those who use them 2X/week, so it does make sense to treat the flare and than taper down to that level for maintenance. Unf. for me, I seem to need to use them nightly of I have problems. I have been on them nightly for a pretty long time. Trying to make peace w/ this...however...it doesn't mean that you can't treat the flare and than be able to go off of them. I don't believe that your colon gets addicted to them or anything. It has the same drug in it as the oral, but just goes in the other way and more directly. I would def try them if I were you.
Posted 1/11/2012 1:02 AM (GMT 0)
Oh BTW, these enemas are not like the ones you used for your colonoscopy. You would use them at night and try to retain while you sleep. It does take some getting used to and you should search the site for great tips that were given about retaining them. Also helps to have a good sense of humor about these things. BTW, be prepared that if you pick them up at the pharmacy, they come in big boxes so there is nothing discreet about it. (you may want to wear your sunglasses and a trench coat when you get them..lol) Again, good sense of humor about these things.
Let us know what you decide to do.
B
Posted 1/11/2012 1:15 AM (GMT 0)
Thanks guys. I still don't know what my GI will have in mind, so I'm a little nervous about what his decision is going to be. I just hope it's some form of 5-ASA, and only temporary if it's rectal.

My first two years after being diagnosed with UC were great. I just took the pills daily, didn't have any side effects or any UC symptoms at all. I could eat or do anything I wanted, and it was almost as if I didn't even have the disease. I have a feeling that I'll never be able to go back to that now. :(
Posted 1/11/2012 1:24 AM (GMT 0)
Max, you will. I was like that too. When I was diagnosed, I took Asacol 9 a day and that was it for over a year. I had no symptoms at all. It was great. Then I had a massive flare up and it took a while to get a handle on things but I've been doing pretty well for quite a while now. There is hope :)
Posted 1/11/2012 6:23 AM (GMT 0)
Max....ALL your flares will be rectally involved. That's where it starts! moves upwards, heals downwards...from the rectum, to the rectum or limited to the rectum.

The rectum needs meds, and oral meds won't cover it, hence the suggestions to use them. Because...all of us have rectum involvement. They should still be used even if one's UC is past the rectum.

The enemas are retention medication...not the kind that make you go.

Regarding Pentasa, it covers the entire colon eventually, but it's released in the first part of the ileum.

Maybe you should consider to try Asacol.

q
Posted 1/11/2012 7:19 AM (GMT 0)
If i could use mesalamine enemas for the rest of my life everyday, even twice a day, and be flare free forever. SIGN ME UP NOW! They are easy once getting used to.
Posted 1/11/2012 7:02 PM (GMT 0)
Your pharmacist and/or doctor should be able to tell you whether Apriso is available for Rx in Canada. It is made by Salix in North Carolina, USA. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/11/2012 7:26 PM (GMT 0)
I agree with the enemas. I use them for maintenace but if I'm flaring its nightly. Do we enjoy them? Heck no but for me the alternative would be pred and I don't want to go there again if I can help it. I also use Lialda and I don't feel that I've had any hair loss from it. I will say that on pred I lost alot more than what I would consider to be normal.

Hope that whatever you choose to try works for you....its hard when it all works differently for everyone. Good luck.
Posted 1/11/2012 7:35 PM (GMT 0)
Max think about it.
Enemas can be in 4gr pumps. You need at least 10 asacol pills to match that in quantity by it doesnt go directly to your rectum.

Im only on the enemas now but will soon match the oral pills too.
Think flare? think about location location location and well its down under!

The enemas can be tricky at first but youll get over it.
To be honest my fiance cant understand how much anal time i have but you get used to everything trust me on that :P
Posted 1/11/2012 7:47 PM (GMT 0)
ahah sorry to everyone about my answer. I reread and it sounded a bit naughty! It's just a bad translation sorry for that im only a native french speaker :P
Posted 1/12/2012 3:10 AM (GMT 0)
The enemas work well. My problem was finding that time at night when I wouldn't need to get up again and falling asleep while waiting for that time before I did the enema so I would miss doses. I need to stay in bed for 15 minutes or more before getting up or things can start leaking. My kids, cats or hunger would make me get up after going to bed.
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