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Ulcerative Colitis
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Posted 1/30/2014 5:26 AM (GMT 0)
I was diagnosed dec of 2010 and takingApriso which felt like a miracle. Very few dramatic flares until Jan 2 when I went into a full blown up flare of blood, diarehea bloating,the whole miserable enchilada . I'm stuck here now even though I doubled dosage from 4 capsules to eight. Also taking Canasa suppositories. Still no real relief yet...
Anyone out there on this drug, can you share your ups and downs?
I don't want to go to the next level of Pred which my GI says might be my next step!
Posted 1/30/2014 2:05 PM (GMT 0)
pred is the quickest way to feel better - if it were me, I would definitely give it a shot - lots of folks have been on it short term w/o suffering any lasting side effects -

good luck -

Post Edited (soystud) : 1/30/2014 7:10:04 AM (GMT-7)

Posted 1/30/2014 5:42 PM (GMT 0)
Thanks!
I actually think I am feeling some positive results from my present regiment. At least I feel a little easier if I have to take the Pred ext week
Posted 1/30/2014 6:05 PM (GMT 0)
Did you cut down on the Apriso at all while in remission? If so, you probably shouldn't have. Prednisone is one of the most horrible drugs a person can take - long term. It can be an absolute miracle drug - short term. The trouble is, prednisone by itself only works while you take it so hopefully it is good enough to get you to remission so that your maintenance meds can keep you there as the pred is tapered back. If they aren't then once you taper back the pred your symptoms will return all over again. Many people fall into the evil prednisone trap that when tapered and they get worse, the dosage is increased again and this cycle repeats over and over again - keeping you on pred long term because you become pred dependent. To avoid this from happening you just have to be ok with returning to your previous condition and not accepting this vicous cycle which keeps you on pred long term and try plan B instead.
Posted 1/30/2014 6:28 PM (GMT 0)
A paraphrased version of what I put in my email response to you (so that if anyone searches for info on Apriso, they'll see it).

I've been doing well on Apriso, but am using mesalamine enemas twice weekly as well.

I think you have options before using oral pred. You can try mesalamine enemas or steroid enemas (use them every night) to see if that helps. Or, you could even use the mesalamine at night and a steroid foam enema (they're easier to retain, I've heard) during the day.

You could also try a different mesalamine-based oral med. It might work better to pull you out of the flare.

That said, don't be too terribly scared of pred. I had to use it to gain remission, and I did very, very well on it -- I didn't have a problem with side effects and I was able to taper off pretty easily. I also wasn't on a high dose for very long at all. I took 40 mg for 5 days, 30 mg for 5 days, 20 mg for about a week or so (I can't really remember), then 10 mg for a couple of weeks, then 10 mg evey other day for a couple of weeks. I also split my dosage -- when I was on 40 mg I took 10 mg at breakfast, luch, dinner, and bedtime. When I dropped to 30 mg, I dropped the bedtime dose, and so on and so forth. My GI said the adrenals are suppressed less when you split it up like that, making it easier to taper off.
Posted 1/31/2014 12:04 AM (GMT 0)
Thanks Gary and Fruitgirl.
No way did I give up my Apriso! I may not even have to take the Pred this time around. Down to 4 BM so far when I was actually at 10/12!
Maybe the Canasa is helping. So far only trace blood, when prior to date it was pretty bad.
Someone said Apriso was more of a maintenance drug but if that is so, why was it the only thing prescribed when I got diagnosed dec 2010 in my first bad flare? but it held up for 3 years until this vicious flare attack.
By the way, talk about stress related. My flare started up Jan 2 when this street druggie stole our car from right under hubby while he was pumping gas. Moral, NEVER leave your keys in the car, not even for a second! then you may not get a flare! Shame on hubby!
Posted 1/31/2014 4:24 AM (GMT 0)
So sorry to hear about your flare and about your car being stolen! Wow, that is horrible!

I am on Apriso, but that was after taking Asacol HD to get my latest flare under control. I was taking it three times a day, at 1600 mg each time (4800 mg a day). Even with doubling your dose, it's probably just not enough mesalamine. Unfortunately, what worked for one flare doesn't always work for them all.
Posted 1/31/2014 3:26 PM (GMT 0)
Thanks
What is Asacol? What are the side effects and has it less side effects as the Pred? Also question for Fruitgirl . How did your body react to the mesalamine enemas and has it helped you stay in remission?
Have you tried the Asacol HD
Thanks all!
Posted 1/31/2014 3:50 PM (GMT 0)
Asacol HD is mesalamine, the same as Apriso, only a stronger dosage. Each tablet has 800 mg. Apriso is usually good for maintenance, but may not be enough for a flare.
Posted 1/31/2014 3:58 PM (GMT 0)
Apriso, Asacol, Asacol HD, Delizcol, Lialda, and Pentasa are all mesalamine-based oral drugs. The difference is in how they dissolve. Asacol is no longer in production, though.

Canasa (name brand only) is a meslamine-based suppository and Rowasa (and generic equivalents) is a mesalamine-based enema.

I was put on Asacol when I was diagnosed and reached remission using it. After I gained remission, I asked my GI to switch to one of the once-daily meds (Asacol is generally taken three times a day), because I wanted the convenience of one-daily dosing. At the time, I didn't realize that Aspriso had a much lower dose of mesalamine, but later on had a talk with my GI about it. The theory of why Apriso's dose of mesalamine is much lower is because of how it dissolves in the colon, it's more available. Or something.

At any rate, I think it's definitely an option to try one of the mesalamine oral meds that can deliver 4800 mg of mesalamine a day. And it's probably something I'd try if I flare again.

I've had zero side effects from the enemas. I really can't say for sure that it's helped me stay in remission, because I've never tried to go off of them. Studies show that patients who use meslamine enemas twice weekly, in conjunction with oral meds stay in remission longer than those who only use oral meds. This is because the mesalamine-based oral meds don't do a great job at treating the rectum and distal colon.

I don't mind using the enemas, so figure that using one twice a week is a small price to pay to remain in such a stable remission.
Posted 1/31/2014 4:23 PM (GMT 0)
Everything Fruitgirl said is right on. I too would go back to the higher dosage and frequency of the other meds in the event of another flare.

Asacol is no longer in production, but Asacol HD is. It is a twice the mg that Asacol was (800 mg each tablet vs. 400 mg).
Posted 1/31/2014 4:43 PM (GMT 0)
Thanks so much for the clarification Fruitgirl!
. You have given me more info than my GI.
Today when I speak to him I will discuss these options.
I don't mind the enema if it helps me feel better. I am not comfortable with what I have read about the Pred and I'm physiologically resisting it.
Would you and anyone following this conversation share your age at the time you were diagnosed? I was 59 in 2010 when diagnosed.
Not out of the woods yet. Still can't seem to eat much without suffering a visit to the bathroom. Right now I am obviously being very careful.
Just when I think I am better, I get slammed down. But must say, lots less blood with occasional formation. And that's a good thing!
Posted 1/31/2014 4:49 PM (GMT 0)
You're welcome. I encourage you to do some reading about the different meds -- the ccfa.org website is a good place to start. I spent a lot of time reading about the treatment options after I was diagnosed, as it was my way of dealing with it.

I was 30 when I was diagnosed.
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