Flare not taking to prednisone

So I started to flare over the holidays and things got bad when my formed stool went to diahrea on the first. I saw my Gi and I had lost about 20 pounds in less than a month. I had been on 40mg of prednisone just for maintaining my daily activity but things were getting worse.

I told my GI that I wanted to be aggresive with this flare because I had not had one this bad without being in the hospital. They put me on a liquid diet, upped my predisone to 40mg twice a day, and my colon has yet to react to the pred. I first started bleeding a lot with mucous but that has started to go down a little. I still have bleeding but not bowls of blood. When I started this flare, I had blood clots and mucous but less now.

I know when Prednisone kicks in, you feel it kick in. Its a miracle pill in certain ways and my body has always taken to it well. I rarely get side effects and thats why I was so ready to get on it, but my body just isnt responding. Has anyone ever had a stubborn flare like this? Its been over a week and still not feeling the prednisone.

The flare I experienced when first diagnosed 13 years ago was particularly noxious. I went from relatively normal to 35 times a day on the john with bad cramping and bloody diarrhea in roughly four weeks. Ultimately I was hospitalized and only survived the affair with my colon intact because I kept putting off the surgeon who kept hovering over my case daily like the angel of death. After three weeks on intervenous steroids, I was released to a two month course of prednisone at home. Thereafter it was Asacol in declining doses eventually reaching two 400mg tablets twice a day, the maintenance dose at the time. However, I very much doubt that this episode ever would have gotten this far along had I had competent medical guidance from the outset. From the time that blood first appeared in my stool - about a week into the diarrhea - my primary care physician dithered. First it was a course of Cipro, then a stool sample, then, after three weeks, finally, a colonoscopy. Diagnosis: Pan-colitis. Yet, even then, I was treated with Asacol, which, given the benefit of hindsight, had to be about as inadequate a choice as possible under the circumstances. I was alone at the time and sinking fast. A week later, I was hospitalized at a major teaching institution where they actually knew something about how to treat this disease. I am convinced that this hospitalization could have been avoided had I been treated with prednisone from the outset. Only my gratitude at having survived the ordeal still in possession of my colon prevented my seeking legal counsel. To this day I shake my head at the incompetence.

How it is that you welcome the prednisone "kicking in", I'll never grasp. While it is undoubtedly a most effective drug, it is also a horribly nasty one. All I can remember is the stiff feeling in my abdomen, the ravenous hunger, the loss of hair and the bouts of anger. Better than the colitis to be sure but nothing to welcome, certainly. I will say a prayer that your flare is brought under control promptly. Yours is a history that justifies prayer. Every good wish.

Post Edited (Captain Ca-Ca) : 1/17/2012 4:57:33 PM (GMT-7)

I am sorry you're on such a high dose of prednisone. I hate the stuff myself, especially if it's not providing you relief.

I think you should get a stool test for c. diff or other bacteria. If you had a bacteria along with UC, it would be very difficult to see results with the UC treatment.

At the point where I am right now, on 6mp and high doses of mesalamine, had a tough time with pred and side effects, I think I would opt for Remicade if I were in your shoes. That's just my personal feeling because I haven't lost all of my pred weight and I don't want to go on that crazy rollercoaster again.

There are some alternatives worth looking into in the resources thread. FB, triple antibiotics combo, LDN..

When I was taking 40 mg I was first told to take 20 in the am and 20 in the pm but the pm dose should be at 3 or 4 because it could cause you to not sleep. The second doctor told me to take it all in the am so that I would sleep better. It worked better for me when taking it all at once.

I went through a similar experience this past fall semester, after having been in pretty great health for over four years (with the help of imuran and lialda). I was diagnosed at ~7 years of age and am now 23, so I've been through this for quite some time. I think part of the reason why things got so out of hand was that I dithered around a bit at first -- avoiding prednisone like the plague and (rationally) thinking that "I've been healthy for soooo long, this can't be anything too serious" -- until I ended up in the hospital after failing to improve on 40mg. I'm usually a quick responder to steroids, but this time only IV steroids (solumedrol) at 80mg equivalent slowly put me into a tenuous, rather stressful remission over the course of a week as an inpatient. BMs and cramping were decent, but I had bouts of bad nausea which made me very worried and uncomfortable. Since then, I've managed to slowly but surely continue the taper at school and at home over winter break. I'm now down to 6mg and and starting to worry much less and enjoy life more. So great to be back.

Have others had flares like this that were tougher to put out with prednisone? Are such flares usually the beginning of a new, more difficult-to-manage stage of the disease, or can they be followed by easy flares?

In any case, I hope that your flare responds quickly and that 2012 brings a lasting remission for us all.

I took 100 mg per day in 2010 and it had no effect. I had used it ealier in the year and got off too quickly tapered too fast to get back into gym.

Have you been on it in the last 12 months ?

2008 it did not work also and I believe it was because I took a different medication which interfered with the liver's ability to convert prednisone to prednisolone. You have to have the p45 enzyme or something like that.

So in the hospital you get prednisolone I.V. and it does not require a pass thru the liver and it helped. If it does not start working SOON I would tell the doc your going to ER to be admitted and meet ya there for the prednisolone.

My first major UC flare responded well with a 40 mg prednisone dose and a typical taper and onto Lialda for maintenance. But the second major flare was a different story, 40 mg pred just wasn't doing the job, increased to 50 mg still no luck, increased to 60 mg pred per day in morning still no luck, then we went back down to 40 mg but split the dose 20 mg morning 20 mg at night and that did the trick. Had to stay on that dose for a long time before tapering and the taper was kinda tricky, taper down symptoms come back, go back up on the dose for awhile and try to taper again, eventually get off pred but also started Azathiropine somewhere in the taper.

The pred did a lot of damage to my body that I'm still trying to recover from. I'd recommend getting off it as soon as possible.

Have not had a "major" flare since starting the Azathiropine.

Good luck!