Apriso, Proctofoam, Hydrocortisone Enemas, AND Canasa!

Saw a new GI today--my main hope was that I would finally be put on enemas, which I've been begging my other GI for. After a recent bad flare, I seem to be finally entering remission as of 4 days ago (no blood! some formed stools!) but she ended doing a sigmoid scope. I still have active, mild to moderate inflammation--though she can tell things have improved she noted that they could also get worse.

So, here's the new plan:

1) 4 pills of Apriso TWICE a day (so 3g total..which is more than the rec dosage) (I am at max Lialda dosage, and she doesn't believe it's working..I don't either. So starting Apriso instead.)
2) Continue on 20mg of Prednisone, do not taper anymore
3) Proctofoam first (do this TWICE a day, morning and night)
4) After foam, Canasa (TWICE a day)
5) After Canasa, hydrocortisone enema (TWICE a day)

This seems like A LOT, which she admitted, but she argued that aggressive oral and topical treatment has been shown as an effective way not just induce remission but also promote mucousal healing, which is what I really need if I want to stop these flares for an extended period.

Has anyone been on a similar regimen? Sticking things up my butt 6 times a day caught me by surprise!t

Sounds like the Roberts Center to me, big on Apriso rather than Lialda. RE rectal meds, you got what you were after! Try using the liquid enema at bedtime, and the foam or suppository in the AM preferably post-bm. The doc doesn't really expect you to insert 6 times daily when you're also on oral meds. Just teasing you a bit + making sure you're serious about continuing need for medication of UC. Good for you that you consulted in a better place! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

Well, you can probably pop the Canasa in right after the foam but you will definitely have to wait a while to do the enema. That does seem like a crazy amount of stuff going in your butt everyday! As for the Apriso, my doctor told me 8/day is the flaring dosage he uses. I hope it works!!!

Probably the doctor prescribed Cortifoam (10% steroid retention foam) for you, not Proctofoam (1% steroid foam, basically a hemhorroid treatment). In that case I could see a rationale for inserting foam a while after the suppository-- because the latter starts to ooze out after it dissolves. Foam, on the other hand, stays where the applicator puts it-- so it may prevent the oozing out of the greasy suppository. Another gastro at this practice once told me that some UCers reported using an Anusol suppository "to push the Rx suppository up higher". (LOL.) The foam is definitely the neatest of rectal meds, but the liquid enemas reach the highest topically (sigmoid colon). Good luck with the regimen! Let us know how you're doing. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

seems overkill...from nothing to that. And all steroid as well.

 

Keep us posted.

q

but that much steroids to me is still overkill....I think it's a fine line, personally...and wondering why the 5ASA enemas weren't at least considered.

I'm spoiled...

q

Good to hear...not meaning the moonface.

q

Susan--thanks for that! And glad you're doing well all things considered. I was really impressed, but also unfamiliar with the approach, so I've been taking it cautiously. But I'm optimistic. Aggressive is good, though my first GI was aggressive in the wrong manner (immediately put on Remicade) so the more benign approach we're taking seems good.

I heard of issue with mixing so many meds together. First you don't know which one is working and second you don't know what is reacting with the other plus reacting with you!

I would avoid the cocktail mixes. Treatment need to be focus on the location and severity of the condition, not on the combination of meds. So far I'm doing OK on Low Dose Naltrexone and Prednisone. Planning on tapering off Pred and keep LDN as my maintenance drug. This is my doc's approach. It's amazing how you can consult several doctors and get several different treatments methods.

be careful!

Glad to hear your getting result without bad side effects. I tend to be very sensitive to the traditional meds. Starting to see side effects on my 5th week of Prednisone. My face is breaking out just as when I was 13 years old!

The trick will be weaning off the Prednisone. Hopefully you'll hv a good maintenance plan. My plan is to stick with low dose naltrexone. Seems to be helping the Pred!

Just an update for those interested in this aggressive topical route...

I'm having very wide, fully-formed, bloodless stools 2-3x days. No pain, much less gas, and the bloating is all prednisone related. Still feel a bit of urgency but not typical UC urgency...I think it's almost just surprise that I'm back to having normal "going" feelings.

I do the foam/suppository some mornings (GI wants me to do every day, but it does cause a bit general irritation and sometimes constipation) and the foam/suppository/enema every night. Now at 15mg of prednisone (and still 8 pills of Apriso) and will be tapering VERY slowly after a month and a half (15/week, 10/week, 7.5/week, 5/week, 2.5/week, 1/week) while continuing topical treatment. If I have any problems as I do this, the GI said then I may need to consider another immunosupporessant route, but I'll deal with that when we get there. Fingers crossed!

That's great news mkl, I hope you are able to taper off successfully. It seems like a long road but you will be off before you know it.

mkl11..I would hope that before you go the immuno route, the doc would put you on 5ASA rectal enemas.

q