Question on Rectal Meds (Quincy?)

Ok, I will creep in here ahead of quincy - mostly because it was her who convinced me they might work for me.

I also cannot tolerate mesalamines of any kind - they made me sick including Rowasa.  When I changed GI doctors I was on prednisone - tapered to 20 mg. and 6MP.  Since 6MP was not helping he put me on Cortifoam rectal and Anusol suppositories - THREE times a day while tapering and stopping prednisone.

I only did three times a day a couple times but used the Cortifoam and Anusol twice a day until the rest of my symptoms were about normal (NO bleeding or mucous - less discomfort on left side).  He told me to taper the rectal meds as I felt better.  Then I had to change doctors again (he was too far away).  He concurred with using Cortifoam and Anusol so I use it about every weekend - sometimes a couple times - if I feel a "twinge of symptoms".  Worked for me and because my inflammation, etc. is very low and mostly rectal he said I don't really need the oral meds right now anyway.  I think possibly the cortisone enemas would work better and maybe faster but I could not apply them and maintain them overnight - foam stays where it belongs!

Oh, by the way, I did not get the side effects like prednisone except occasional moody maybe and headache but nothing too bad - you only absorb a small amount of steroids. 

Everyone is different but that is my experience.

ElaineNY

Just piping in to say I am very interested in learning more about the rectal meds too, particularly the enemas. 

The first drug I took for UC was Canasa suppository and my symptoms got worse.  I tried a hydrocortisone supposity course but didn't really notice any difference with that. 

So I am reading replies with great interest as well.

songlady said...
I've been on the steroid enemas on and off for years - they address my flares quickly and efficiently - I start feeling relief within a day or two, usually.

Just out of curiosity, how long do you have to take them, and how do you go about tapering?

Quincy, he has tried Asacol, Apriso and generic Colazal.  His UC is throughout.  When they did the colonoscopy they saw it through the transverse colon, and did biopsies of the ascending and it turns out that part is affected as well.  Does that mean the enemas are pretty much out as a treatment option since so much of the colon is affected?

His original doctor, the colo-rectal surgeon, started him on Asacol and a small dose of prednisone (20mg/day for the 1st week, then 10mg/day for the 2nd).  For the first week or so things seemed unchanged, then started to get worse, so at the 2 week followup appointment the Dr. upped the Asacol dosage and started him on Canasa suppositories.  Then things REALLY started getting bad.  After about a week or so of him having extreme stomach pains and vomiting (and weight loss), we went to the ER and he was admitted to the hospital for 5 days.  He was feeling much better when we left the hospital, but then the next day the stomach pains returned and we went to the ER twice more, where they just gave him pain meds (that didn't work very well) and sent us home.  They didn't know what was causing the stomach pains.

After leaving the hospital he started seeing the GI doctor that saw him in the hospital, and this doctor had him increase his prednisone dost to 40mg/day and we kept on with the Asacol.  He was still feeling intense stomach pain, so the GI had him try Apriso, then finally lay off the mesalamine products all together.  This seemed to help.  After a while of being off the mesalamine products, the doc wanted to try colazal to see if that worked, and things seemed fine for a couple of weeks, but then started having nausea and was vomiting again, and just generally feeling sick.  After he stopped taking the colazal and got it out of his system, things improved.  He finally tapered completely off the prednisone (the only drug he took for quite a while) about a month ago and things were pretty good for a while. 

He had a little blood again last night and has had cramping today.  D isn't terrible, but not quite normal either.  Is this a sign of another flare?

I don't remember how long he did the Canasa, maybe a week?  That seems so long ago (and so many meds ago!).

Thanks again for sharing your wisdom!

I second Quincy's opinion re. your husband.

The steroid enemas' package insert says that 3 weeks is the norm to bring about reduction of inflammation. So even if my bleeding and pain stops in a few days, I tent to be on them every night for at least the three weeks.
In a bad flare I have been on them for months. Once I was on them for almost a year from start to the finish of the taper - and for me, as I said above, I experienced virtually no side effects. I understand (from folks here) that the rectal wall can become thinned from such long-term use, but..... I have no clue about that. (Metamucil keeps my stools soft enough that I imagine I don't stress the rectal walls too much.)
The taper: I take them nightly until my symptoms have stopped, and for one more week to take care of inflammation that isn't so obvious, then I go to every other night for a week, then every third night for a week, and so on, until I'm doing them once a week - and after doing that once or twice I stop.
There have been times I've done them morning and night, twice a day. For me, they are much preferable to pred.
It took months, but I did kick a flare this way that went up through the transverse, a few years ago. Using Entocort at the same time to hit it from the top would have been quicker and wiser.
My theory is that even if the inflammation goes higher than the enemas can reach, if I can calm down the inflammation at the bottom, I am more comfortable.
Good luck to you!!

songlady said...
I second Quincy's opinion re. your husband.

The steroid enemas' package insert says that 3 weeks is the norm to bring about reduction of inflammation. So even if my bleeding and pain stops in a few days, I tent to be on them every night for at least the three weeks.
In a bad flare I have been on them for months. Once I was on them for almost a year from start to the finish of the taper - and for me, as I understand (from folks here) that the rectal wall can become thinned from such long-term use, but..... I have no clue about that.

yes, it's true with the enemas (thinning)....it's, I believe, one of the side effects listed.

q