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pred not helping enough

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Crohn's Disease
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Posted 3/14/2010 5:08 AM (GMT 0)
Prednisone used to always help my flares. I was recently put on 60mg with a fairly quick taper, and then got put back on it at 40mg for the last several days. I am still going nearly 10 times a day. How is this much pred not helping? I've been using immodium so I can work, but today I even had to take a second one. Then I was fine for several hours, but the D always returns. I think they are going to put me on imuran soon, but I understand that won't even affect things for a few months or so.

Does prednisone not help for some of us? Is there a reason why...I mean, if it's inflammatory, why isn't it working better? I'm getting so bummed out that this will never end.
Posted 3/14/2010 5:29 AM (GMT 0)
I'm on imuran and pred. the imuran has taken my appetite away really bad, but hte pred has helped my flare, this flare is different than it is in my esophogus and throat with cankersores in mouth and on my tongue, pred. is the only thing that has helped, but i have narrowing or strictures so pred has caused alittle constipation which i hate, nervous about obsturctions. I've had 2 emergency type, that followed by emergency surgery, very very painful. so constipation always scares me.

Posted 3/14/2010 8:51 PM (GMT 0)
Artist guy, is it just lack of appetite on imuran or it is nausea causing it? I'm a bit nervous about going on it. I've not had an obstruction but my problems seem to only be in the colon so maybe that is why.

As each day passes I just see more signs that remind me of when I had c diff. I've already tested negative for it twice but I just can't shake this feeling that those tests were wrong. I'm worried if I ask to test again and it's negative they will never take me seriously about it again. I suppose if I just wait and see it will only get worse, but I'm worried about my bosses getting tired of me calling in sick too often. I'm having loose bm's even at night now, and for the past couple of days the immodium I took didn't help very long. When I was in the ER they told me if I had c diff the immodium wouldn't work, so all these little clues make me think that's what is happening again. So very frustrating!
Posted 3/16/2010 10:50 PM (GMT 0)
yea i got terminated for too many call in's. terminated on feb 18th this year, but i have a art business that I'm going to go full speed on now that i have more time. and I fell into american rediscovery and reimbursement act, ARRA.  so my wife and I get cobra for 65% reduce rate for 18 months. and my dr immediately put me in state disability Ins. I can't work in a situation where there isn't access to bathroom or I need to lay down from gas cramps. Imuran didn't make me nauseous, just no freiking appetite, i went off it for 3 weeks and jsut stayed on pred. but my gi wants me on remicade, but I'm going to give imuran 1 more month so today is my first day back, we'll see.

Posted 3/16/2010 11:14 PM (GMT 0)
Your meds show that you are on flagyl. Heatmiser, are you still on flagyl?

flagyl is one of the meds used to fight c-diff infections. You are unlikely to test positive for c-diff when you are taking flagyl. Also, unless you are really immuno-suppressed, or you have a strain of c-diff that is resistant to flagyl, it is unlikely that you have c-diff, or will test positive for it.

Have they done a colonoscopy yet? I think perhaps it's time for one. They can usually tell by the biopsy whether the inflammation is because of c-diff or because of UC or crohn's. Also, they can get a really really really fresh stool sample to test for c-diff, to try to get it tested when the toxins are still fresh. I know the prep is horrid, but I think the colonoscopy will tell you what is going on. It should at least get you past the is it c-diff or not part.

PV
Posted 3/17/2010 12:25 AM (GMT 0)
Pred doesn't work for me, gives me immense side-effects too but doesn't help the Crohn's. Thats how I ended up on methotrexate early on after diagnosis. It halved my inflammation levels each week to begin with and got me well enough to be able to go back to school part-time. I then had one dose of infliximab and that boosted me into remission and got me in a position where the methotrexate alone was enough to keep me well.
Posted 3/17/2010 6:43 PM (GMT 0)
I finished the antibiotics. One of my tests was done prior to being on them and the second was done while on them. My last scope was done in August. They didn't see the c-diff then, but I ended up with it a few weeks later. (Maybe I got it during the scope???)

When I had c-diff the test in the hospital took a couple of days to get results back. This time, however, both tests were back much quicker, so I can't help but wonder if one type of test is more accurate, especially if the infection is in the mild stages. I guess I'm having some denial that my cd is really changing and going to give me more trouble than it used to.

I just don't want to be a guinea pig with all these harsher meds if it's something that an antibiotic would cure. Last year I was sick for months and only got better once we got the c-diff battled, so in my mind I'm worried that's what is happening again. Unfortunately my "better" only lasted 4 months.

Artist guy, I wouldn't mind the no appetite since I am overweight. I don't remember any problems when I was on it for a week before, but they said it takes a few months before it works anyway. Good luck with you new adventure. That's great if you get to do something you really enjoy.
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