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Cortifoam worked at first, now backsliding. Keep trying or move on?

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Ulcerative Colitis
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Posted 8/18/2014 10:56 AM (GMT 0)
Hi all:

I started Cortifoam in May for a mild flare, it worked great and I started to taper. My symptoms seemed to get slightly worse so I decided I'd tapered too quickly so I went back to everyday (daytime) and still my mesalamine enemas at night. Well...it helped some but I never got back to where I was 100%. I'd have great days, even a week, then a couple not so great days. And it's cycled like that for almost 2 months now...until this past weekend...I'm having loose stools, some blood (not like my initial flare at all), mainly BMs (anywhere from 3-7) are all in the morning within a few hours...but it's been 3 straight days of that, which has not happened since before I started Cortifoam.

I DO NOT want to take Pred (I know, no one does). I wondering about the hydrocort enema...maybe the foam was helping because it could treat at the very bottom but can't reach up far enough? I have proctosigmoiditis. But My GI and I thought to try the foam first b/c the inflammation starts at the bottom and I felt like that's where it was.

I don't know if I'm ready to look past the steroids just yet...I'm trying not to rush through the drugs. And this flare is nowhere near my initial one when I was dx...but I have no desire for it to get to that point...or worse.

Our family does have a vacation planned in early Oct...I'd like to get this under control or close to it by then.

Thoughts? Words of wisdom?
Posted 8/18/2014 11:01 AM (GMT 0)
If your symptoms get worse after tapering down cortifoam (a steroid) then quite clearly your uc maintenance medications are not enough. The only way you are getting off eteroids is with stronger uc meds. Either increasing the dosage of your current meds (if not already at max dose) or going up the medication ladder.

Steroids are far more dangerous then any one uc medication.
Posted 8/18/2014 11:14 AM (GMT 0)
Hi iPoop, I see you have proctosigmoiditis as well and you are on Remi...did you go up the entire ladder of drugs...did you try steroids and they failed you? I was hoping to stop the flare with steroids and go back to my maintenance of 5ASAs...wishful thinking huh? I'm hoping perhaps the foam just could not reach up as far as needed so a hydrocort enema would help that.

The rectal steroids concern me enough...I have do desire to go on the oral ones.

What's next after steroids? I know there are different options for different people, but I'm not that sick...but I also don't want constant inflammation. And I also don't want to be passive and get really sick.

Ugh..diseases!
Posted 8/18/2014 2:42 PM (GMT 0)
Hi Amy,
Ugh, this disease is the pits! A few thoughts....I am always simmering but I don't think symptoms warrant an immuno...at least at this point.
When thing start to ratchet up, I try various rectal combos. The mesalamine enemas is the staple, I always use that at night. Than I'll try a steroid supp in the a.m. If that isn't cutting it, I add in Cortifoam and dump the supp. If that doesn't work....I try a mesalamine enema in the morn and night. Sometimes I even mix it up..again always mesalamine enema at night, but one morn do cortifoam, next an extra enema...well you get the idea. You can try the steroid enema...that might help. For me it gave me side effects so I try to use that as a last rectal resort..however others have great luck with it.

Sorry this is coming back to haunt again...wish they would come up with a darn cure already. Good luck and keep us posted.
B
Posted 8/18/2014 2:46 PM (GMT 0)
Also want to add, that if rectals don't work...I think I would try Uceris next if I was in your shoes.
B
Posted 8/19/2014 11:59 AM (GMT 0)
Thanks hateuc.

I've been doing a mix of the mesalamine enemas and the cortifoam. Just not quite sure where to turn next.

Anyone else have thoughts?
Posted 8/19/2014 12:35 PM (GMT 0)
Just reading your signature, are you sure your probiotic actually does something or are you taking it just to take a probiotic? It may not be the right one for you.
Posted 8/19/2014 8:00 PM (GMT 0)
I posted the post below on a similar question:

King of the Toilet said...
There is a note that might be relevant on the instructions of my corticosteroid enema (colifoam):
After prolonged use of at least 10-15 days, you might notice a temporary decrease or loss of the effectiveness of corticosteroids (especially the fluorinated) due to tachyphylaxis. The phenomenon will be restored after pausing the use for several days or weeks.

I have also experienced the same.
Posted 8/20/2014 1:42 AM (GMT 0)
Hi Gary,
This is the 3rd probiotic I've tried, and the only one I noticed a difference with. Not that it would put/keep me in remission on its own but I did note a difference. I do like to be on a probiotic also for the fact that it will help to have it going should I need an antibiotic.

Hi King,
Well that is interesting indeed. I've seen where people will use the foam for months...but what you posted makes sense. Thank you.
Posted 8/20/2014 5:43 AM (GMT 0)
It sounds to me like you need hydrocortisone retention enemas for a while. Cortifoam only treats the rectum & anal canal. When the sigmoid colon is involved, too, a liquid enema is needed to reach it, but if you're using mesalamine liquid nightly & still have 3-7 bms with some blood next morning, that med doesn't curb your inflammation. Hydrocorts are generally fast-acting & safe to use daily for 3-4 weeks; if able to taper at 30 days then that just takes another week. You can also check into Budesonide; not sure, though, whether UCers do as well on the non-systemic steroid meds. Don't be afraid of steroid enemas, though, because they're much less potent than Pred & don't usually bring on negative side effects during 4-6 weeks of use. Be sure to rest as much as you can when flaring-- to help heal the inflamed tissue. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
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