Afraid to take the next step

I was diagnosed with UC in 2010. At that time my symptoms were lots of blood and D and going 10+ times a day. My gastro put my on Apriso and rowasa enemas. These knocked out my symptoms in a matter of a week or so. Since then I have been on Apriso daily. I have gotten a few mild flares since then but have always started the rowasa at the first sign of symptoms and it has always been effective in stopping the flare in short order.

i had stopped taking the Apriso for about a month due to an unexplained headache that really had me worried. I had a lot of stress during this time as well. My headache finally went away and i resumed taking the Apriso but after about a week I noticed a flare coming on (rumblings in the gut, D, frequency - but no blood yet). As in the past, I immediately started the rowasa. about 4 days later, the blood came. I was surprised that the rowasa didn't stop the flare in its tracks as had always been the case before.

Now it's been about 3 weeks. My symptoms are generally mild - a little minor pain in the left side (I have left side colitis), some urgency at times (I'm going between 4 to 6 times a day, usually in the morning) and a fair amount of blood and mucus. The only thing that really bothers me is the blood. It's really disconcerting to see it as all of you know. I've been watching what I eat, sticking to the brat diet with a little chicken and salmon for protein. I'm doing the rowasa enemas nightly. But it seems at 3 weeks without noticeable improvement that i need to take further action, even though my symptoms don't seem so severe. I'm afraid of prednisone and all of the other strong drugs. I'm hoping my gastro will just up the rowasa or give me a steroid enema. But I'm also worried about letting my colon stay inflamed for too long.

Any advice would certainly be appreciated. This forum is great. Thanks in advance.

Post Edited (joeyp) : 9/18/2013 2:15:26 PM (GMT-6)

A steroid enema is a good idea, but I really don't think that a relatively short course of pred is such a terrible thing, either. I had to use it to gain remission, but I was only on it for about a month and a half total, and a good half do that time was either 10 mg daily or every other day. I tapered off easily and have been on remission ever since.

Pred isn't too bad if you are not on it for long. I was on it for 2 months for my first time and I had mild symptoms then. When I had it for a month or less, the only symptom I had was weight gain, which in my case at the time was a godsend.

I was on it for four days and hated everything about it. It did not sit well with me at all, but we are all dif. I got off it immediatly. Try the ennies first.

"You should have never stopped the Apriso. Future flares often get harder and harder to treat as you are now finding out. I hope you learned your lesson and will not do that again once you attain remission"

the mom you didn't come here for ;-)

 

Post Edited (soystud) : 9/18/2013 9:31:31 PM (GMT-6)

Ha gary a little harsh....

joeyp: I know it doesn't seem like your symptoms are serious, but going 4-6 times a day isn't even close to normal or remission. You need to add something. I really wish I would have tried the dread pred sooner than I did as I think it would have kept me out of my full-on flare. I started it too late because I was also afraid of side effects, but things can get really bad really fast. Keep that in mind when making your decision. Wishing you the best.

I wouldn't let the worry of becoming pred dependent stop you from taking a short course of it. I mean, if you aren't going to be able to get off of it w/o flaring, you're already that way; taking the pred won't cause it (I hope that what I'm saying makes sense). I wouldn't just put up with those type of symptoms when there's a pretty good chance that either steroid enemas or a short course of oral pred will fix it.

Well, you can become dependent on it, if you stay on it long enough you completely trash your adrenals. But, if you and your doctor are smart, that won't happen.

I think people also get anxious about how to taper from prednisone. I don't blame anyone for being nervous about it, given that I've had different doctors give me different directions for how to taper. And not just different but, "Your old doctor did WHAT? That could have killed you/that was SO overly cautious. Here's how you should have done it." Which means that some folks here are on very, very long tapers, and some folks are on much shorter ones. The general idea is that if you're on prednisone for more than a week, you just don't want to go off it cold turkey.

" all we are saying is give pred a chance"

;-)