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what to try when pred isnt helping

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Ulcerative Colitis
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Posted 2/28/2014 5:06 PM (GMT 0)
Hi all

Thought I would ask here as I am getting very little help from my gastro Dr.
I was referred to a new one in November and still waiting for tests. In the mean time they just left me on pentasa tabs and suppositories which don't control my uc (which was why I was referred in the first place) so I end up on pred a lot. I am in the process of finding a new gastro but can't get in until 10 April anyway.

So no choice but self medicating atm. Started taking pred 40mg for a week but wasn't working so upped it to 50mg for several days still not working upped to 60mg for last 3 days and still not stopping it...but it is stopping me from being completely bed and bathroom bound. I only tried raising dose in extreme desperation. I also had to increase my Pentasa tablets to 2g 3 times daily as I can't keep my suppositories in for long enough to do anything and I don't know what else to do. I am also taking probiotics but they aren't doing much either.

Any suggestions?
Posted 2/28/2014 5:16 PM (GMT 0)
Well, self-medicating is never a good thing, I can tell you that. Prednisone is usually the end all to stop flares, and if that doesn't do it, then you need to see a dr immediately. 60 mg orally is a pretty good sized dose, and after that is IV sized doses.
Have you tried things like Bentyl or Imodium at least?

Can't you find another dr to get into now? This sounds like a pretty good flare.
Posted 2/28/2014 6:45 PM (GMT 0)
Are you taking any probiotics, supplements, or doing and diet changes?
Posted 2/28/2014 8:27 PM (GMT 0)
I am aware self medicating is never a good idea and have tried several times to get new appointments with my gastro. Each time I get told to see how I am in a few more days as there is no appointment available for a month. I agree it isn't good enough. I am in the process of finding myself a Dr more willing and able to provide support.

Yes low residue diet. Probiotics and calcium/vit d supplements.
Posted 2/28/2014 9:08 PM (GMT 0)
Self medicating ... is occasionally necessary... I can say that because I've been there! My doctors haven't done crap for me in the last 8 months.

It of course can be dangerous but I'd be a liar if I said I haven't done what needs to be done to get better!

Just keep advocating for yourself with the doctors! Call! Beg! Plead! DEMAND!

And I am with ya on the prednisone. I have been on it and never gotten any relief at any dose. I was just put back on it again, to try it "on its own" pfffft. Yeah it's still doing nothing. But I guess that could be my c.diff.
Posted 2/28/2014 9:08 PM (GMT 0)
Self medicating ... is occasionally necessary... I can say that because I've been there! My doctors haven't done crap for me in the last 8 months.

It of course can be dangerous but I'd be a liar if I said I haven't done what needs to be done to get better!

Just keep advocating for yourself with the doctors! Call! Beg! Plead! DEMAND!

And I am with ya on the prednisone. I have been on it and never gotten any relief at any dose. I was just put back on it again, to try it "on its own" pfffft. Yeah it's still doing nothing. But I guess that could be my c.diff.
Posted 3/1/2014 2:40 PM (GMT 0)
Prednisone used to work for me but after a few weeks on 40mg, it wasn't working at all! My GI doctor said that if prednisone isn't working, it usually means you have c-diff. She tested my stool and I don't have c-diff. Pred has worked great in the past, but now it works as well as a sugar pill.

I tapered off completely and I'm no worse and no better. I'm waiting for my Simponi to be approved and trying to follow the SCD diet. I have less pain when I'm eating grain free, but I'm still bleeding and going 10 times per day.
Posted 3/1/2014 3:01 PM (GMT 0)
HI Bobella,

Having similar problems with Pred not working. Interesting about what you say about C Diff. When my current flare started I had two days of a small amount of blood them nearly 24hrs of chronic diarhea (Wish I could spell that) and then whoosh - flare.
May get a stool test done
Posted 3/1/2014 5:21 PM (GMT 0)
C diff sucks. I have it right now... and its debilitating. Im very unlucky.

I also tapered off prednisone with no affects or worsening.

Back on it "alone" since Lialda was making me worse. And now that im tackling c diff... I should be seeing results from pred. Im not.

Hope the simponi gets approved quick! Ive heard mostly good things so far.
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