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Pred is not working..... at least like I was hoping it would

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Posted 7/13/2009 5:07 AM (GMT 0)
Hey all... .

  Today is day 12 on Pred, 40mg and today my bleeding has gotten worse... I've been HOPING that it would be continually getting better over time and maybe I should expect a blip or two along the way, but I feel this is more than a blip. I'm back to red toilet water..... I think it's not getting better at this point, and even maybe getting a little worse.  So... I am bummed... I have a follow up appointment on Tuesday with my WONDERFUL Gasto doc... and I'm thinking he's going to want to hit me a bit harder with pred.. maybe 60mg and see if that does anything..  Geez.... I feel so exhausted from all this and I just want to get better!!!!!!  Has anyone been on higher doess like 60mg before?? I thought 40 was tough... but if I gotta do it, I will.....  

  I'm going to bed now as I need to sleep.. I actually have 2 big hay deliveries scheduled for tomorrow and Tuesday... but I got my young hay buckers working for me to unload and stack it... they are SOO Great! They won't even let me touch a bale of hay while I'm sick.... I'm  Luck to have workers like that... FOR SURE.....  All I have to do is drive the truck hauling the hay... easy peasy... :)

I'll let you know how it goes on Tuesday... I'm hoping for maybe a shot at remicade or something along those lines if this pred doesn't help.... I'm just gonna hang in there and see what happens!

Posted 7/13/2009 5:29 AM (GMT 0)

If by day 12 the pred has not stopped the bleeding, your doc will probably up the dosage or put you on other meds.

Pred is a great anti-inflammatory and should work in acute flare-ups.  Ask your doc if you've become refractory to it.  It is common in UC sufferers. 

Posted 7/13/2009 2:21 PM (GMT 0)
Ya, seems like my body is not liking anything I've been doing lately.... This is my first time EVER being on prednisone and I can't believe my body is fighting it so badly.... I was really hoping this would put me in remission.... I don't even have UC that far up my colon... just procttitis... but maybe it has spread up there a ways.... I'm bummed......
Posted 7/13/2009 2:27 PM (GMT 0)
I was on varying doses of pred for 2 years and the bleeding never stopped. Are your other symptoms better? The bleeding might not stop but if you are feeling better the pred is working.

Sue
Posted 7/13/2009 2:55 PM (GMT 0)
My gastro, who subspecializes in IBD treatment, has said that the maximum permissible daily dose of Prednisone is 60 mg. I agree with Suebear, especially if you feel less pain & urgency. It can take a while for bleeding to stop. You need lots of rest & good nutrition to hopefully heal the inflamed tissue. Proctitis can be very stubborn. Hang in there! / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 7/13/2009 3:42 PM (GMT 0)
Why aren't you taking any other meds? It doesn't make sense to me at all that you're not on mesalamine drugs, oral and rectal, (unless you're allergic to them) at the very least. I know you know that pred isn't a long-term solution, and should just be used to get you into remission. And in the meantime, the mesalmaine (or whatever other drug) can still do its part in helping you achieve remission.

Anyway, I hope you start feeling better soon!
Posted 7/13/2009 4:03 PM (GMT 0)
I always started at 60mgs- anything less did nothing. But that 60mg dose kicked my butt into good shape fast! One time I tried to start myself at 40mgs (GI on vacation, I self-medicated) & I got no results at all- wound up being on pred longer than if I had originally started at a higher dose! Bump up to 60mgs/day & see how it goes. Obviously talk with your GI first.
Posted 7/13/2009 4:22 PM (GMT 0)
When I am on pred during a flare it is usually 60mg split 30/30 in two doses. But my GI tells me to start the taper AS SOON as I see any improvement, which is usually within just a few days. So maybe you need the higher dose since you have been waiting 12 days for improvement. Also, I have been on pred many MANY times and never ever been told to stop taking my other meds. That seems very strange to me!
Good luck!
Posted 7/14/2009 6:24 AM (GMT 0)
Thank you guys soooooo much for all the input... I do feel better now hearing your stories and knowing that I'm not just some bizarre case of pred not working... I guess I had my hopes up a bit too high.... (sigh)....

My GI wanted me off all the other drugs, (5ASA's) Until I get a good remission started with the pred.. I have been using Lialda and Rowasa and Canasa daily and they have in the last few months just completely quit working for me. I am hoping that if I go off them for a few months and POSSIBLY... and I mean only possibly start back on them that I might have a better time this round.. it not.. then other medications are the next step..
Posted 7/14/2009 6:24 AM (GMT 0)
Thank you guys soooooo much for all the input... I do feel better now hearing your stories and knowing that I'm not just some bizarre case of pred not working... I guess I had my hopes up a bit too high.... (sigh)....

My GI wanted me off all the other drugs, (5ASA's) Until I get a good remission started with the pred.. I have been using Lialda and Rowasa and Canasa daily and they have in the last few months just completely quit working for me. I am hoping that if I go off them for a few months and POSSIBLY... and I mean only possibly start back on them that I might have a better time this round.. it not.. then other medications are the next step..
Posted 7/14/2009 6:24 AM (GMT 0)
Thank you guys soooooo much for all the input... I do feel better now hearing your stories and knowing that I'm not just some bizarre case of pred not working... I guess I had my hopes up a bit too high.... (sigh)....

My GI wanted me off all the other drugs, (5ASA's) Until I get a good remission started with the pred.. I have been using Lialda and Rowasa and Canasa daily and they have in the last few months just completely quit working for me. I am hoping that if I go off them for a few months and POSSIBLY... and I mean only possibly start back on them that I might have a better time this round.. it not.. then other medications are the next step..

 I was also glad to hear that proctitis can be difficult to treat... seems to definately be the case for me!!!!!  Maybe with upping my prednisone to 60 mg for a couple of weeks, then I can start the tapering process and see how it goes...  I will be talking to him about that tomorrow.... I'm actually looking forward to this visit!!!!

  At least overall, I can eat, I can do things, but the prednisone has me feeling pretty looopy all day and it's hard to concentrate on anything or even drive sometimes....  And, I'm down almost 9 pounds now...  So for now, I'm just taking it a day at a time... trying to take it easy and not worry about too much...  

  I'll let you know how the dr. Appt. Goes tomorrow!!! 

Posted 7/14/2009 6:41 AM (GMT 0)
I was on 60 mg the summer I had to go on disability. It was rough. I had to stay on that dose for like 2 months. My skin felt different, I was so skinny and it seemed like the pred, a clear liquid diet and Lialda took forever to do anything.

I am surprised you are off your other UC meds. Lialda seemed to help once it got into my system. It is a 5ASA but when it gets into your colon, it is like a gel instead of a powder so it adheres better and longer. But it can take time to build up a base, you know... I've also had those horrible immno meds that knock out your white blood cells. Not fun but it did the trick.

I always felt I was setting the meds up for failure. Always using pred when it got bad and every time I had to bump up more and more and more.

Good luck. I really hope you feel better soon!
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