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Ulcerative Colitis
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Posted 10/17/2010 4:14 PM (GMT 0)
about 6 weeks ago I was in a bad flare and put myself (with my GI's ok) on 20mg pred which calmed things down after a few days. I then did the usual taper of -5mg per week down to 0.5 mg for the last week. Things weren't too bad at that stage (avg 4 bms).

I then tried to see if a nightly Salofalk (Canasa) suppository would help me stabilize and maybe help as a maintenance drug with the long term goal of getting off Azathioprine.

Well that turned out to be a massive mistake, the morning after the first supp. was absolute murder, probably the worst flare I've had since the outset of UC in '06. I had 15 bm's.
Being a stubborn sort, I decided to persist with the supps for two more days which turned out to be be two more days of pure hell. Averaging 8 bms lots of blood and more constant numbing rectal pain than I can recall ever suffering before. I stopped them of course.

I'ts clearly obvious I'm severely allergic to 5 ASA drugs.

I was forced to revert to 10 mg pred for a few days with no relief whatsoever (still 8 bms etc) after a few more bad days I upped it to 15 mg on Sat morning and still no joy.

My question is, would I be better off biting the bullet vis-a-vis the known pred risks, and opting for a higher pred dosage say 20 or even 30 mg to pull me out of this painful dilemma?

Any response will be welcomed.

Post Edited (Mackster) : 10/17/2010 10:17:02 AM (GMT-6)

Posted 10/17/2010 4:57 PM (GMT 0)
Have you ever tried steroid enemas? Using these might help you get off the pred easier and less steroid actually enters your blood stream. How long have you been on Aza?
Posted 10/17/2010 7:56 PM (GMT 0)
I second Sherry's suggestion. Since my onset flare (which went on a while ) I haven't been on pred again - I use the steroid enemas if nothing else will help.
Posted 10/17/2010 8:15 PM (GMT 0)
Yes, I've used steroid enemas for about 5 months prior (Hycort) and recently have been using the less intensive foam varieties (proctofoam and cortifoam). I'm so sick I forgot to mention that I'm still using these on alternative nights (procto one night then corti the other)

I've been on aza for about 4 years now and contrary to my GI, I don't think it's working anymore.

I will probably go with cortifoam only 'til I start to feel better. Or maybe get some more Hycort enemas? (I have repeat scripts)

My question is mainly about whether it would be prudent to raise the oral pred dosage to 20 or 30 mg and go on another tapering carousel.

Thanks for your help.

PS I wonder if anyone else has had a major negative reaction to Canasa/Salofalk suppositories?

Post Edited (Mackster) : 10/17/2010 2:20:12 PM (GMT-6)

Posted 10/17/2010 8:19 PM (GMT 0)
I agree try the steriod enemas,  I had to stop salofalk supp and enemas because I was not getting any better with them.  I only use cortifoam and hycort now.  My doc just increased my salofalk tablets and I swear I feel worse when he increases my med than with the lower dose.
Posted 10/17/2010 9:01 PM (GMT 0)
Yes, I can not tolerate mesalamines at all and that includes the Canasa. It makes things 10x's worse for me.

As for the increase of pred, maybe you should get in contact with your GI before you up it to be sure they are ok with it.

As for the Aza not working, I just recently added Allopurinol to my 6mp. It boosts the positive effect of the med while decreasing the toxicity. With this new combo, I have been able to get off the steroid enemas and reach remission. It's a fairly new approach. What happens is that you lower your dose of 6mp or Aza while starting the Allopurinol because high doses of Aza or 6mp is not recommended while being on Allopurinol. So maybe this is something you can ask your GI about. When was the last time you had your metabolites checked?
Posted 10/17/2010 9:49 PM (GMT 0)
That sounds very interesting Red 34. I will certainly query my GI re the Allopurinol.

I get bloodwork done every 3 months for the Aza, would my metabolites be tested with that?

Also, as a moderator have you ever heard of a link with UC and the loss of bone density that has nothing to do with prednisone?

The reason I ask this is a couple of years ago a bone scan showed I'd developed osteopenia.
This was blamed on my 6 to 8 months use of prednisone. The bone specialist put me on weekly Fosovance. It had reversed my density loss at my follow up scan a year later.

Now I don't know if it was a coincidence or not, but for the year I was on Fosovance I was in what you could only describe as remission. Is it possible that this drug could be good for the colon?

I don't know what to make of that, but then again I may be just grasping at straws right now.
Posted 10/17/2010 11:51 PM (GMT 0)
I get my blood drawn every 3 months as well but it's usually just to check to CBC as well as the liver enzymes. The Prometheus metabolites test is separate. This is a specialized test to see how you are metabolizing the AZA/6mp and whether or not you are in the therapeutic range. If you are on the low end of this range or not on it at all then you will not get any benefit from the med.

Sorry, but the only time I've ever heard of bone loss associated with Uc is with the use of pred. Pred can also cause bone necrosis in some, proven by Judy2. I have not heard of Fosovance, so can't help you there but it's good that it increased your bone density!
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