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Decrease in prednisone dosage. Increase in headaches and the dreaded accidents.

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Ulcerative Colitis
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Posted 1/5/2012 12:55 PM (GMT 0)
Hello all,

Since Christmas Eve, my GI doctor decreased my prednisone dosage from 20mg to 10mg every morning. Since the decrease was made, I have noticed an increase in headaches (Only at work mind you) and also an increase in well...the inabilty to hold my poo.  It's beginning to take its toll on me mentally because I am afraid to eat anything and well the headaches have me leaving drained by day's end.  Should I contact my GI to see if he will reup my prednisone dosage?

I also currently take 2 tablets of Asacol HD 3 times a day and 1 tablet of Flagyl 3 times a day.

Thanks for any help and guidance.

Posted 1/5/2012 1:52 PM (GMT 0)
The headaches sound pretty typical of prednisone tapering, but the accidents are where I'd be a little concerned. You should call your doc.
Posted 1/5/2012 2:01 PM (GMT 0)
Wing Zero is right call you GI or get a new GI, it is the worst when the poo control goes are you drinking caffiene as it always sent me I stay away from caffienne now.

mum of 3
Posted 1/5/2012 2:19 PM (GMT 0)
I would also ask for some rectal meds.
Posted 1/5/2012 2:36 PM (GMT 0)
@mum of 3: No, I don't drink any caffeinated beverages. The only thing I've been drinking is water, Snapple Fruit Punch, and Welch's Cherry Juice.

@shearbear46: What do the rectal meds do and what kinds are out there? I'm recently diagnosed so all of this is new to me.

Posted 1/5/2012 3:04 PM (GMT 0)
I second rectal meds. The urgency is the number one thing they help me with, to me urgency means inflammation is still in the rectum and rectal meds put medicine right where it is needed.

I have used cortifoam and mesalamine enemas. Both help with the urgency. Depending how bad it is the cortifoam works faster for me and is easier to hold in initially, then the enemas help maintain things.
Posted 1/5/2012 4:37 PM (GMT 0)
Rectal meds would be things like Rowasa (or generic)...this is a mesalamine enema and would be my first choice. There is also Cortifoam (steroid foam)...I hear it is easy to hold and does not have the steroid side effects as very little is absorbed this way. Also steroid enemas. such as Hycort.

Finally there are Canasa (asa supp) or Anucort (steroid supp). These will really help healing the bottom (most stubborn part and the cause of the accidents)
B
Posted 1/5/2012 8:50 PM (GMT 0)
I agree with the others about Rectal meds but I also think a drop from 20mg to 10mg is quite steep. That's never worked for me. I would have to go slower, to 15mg then 12.5mg, then to 10mg. Many GIs try to recommend a quick taper but it doesn't work for everyone. I would phone the GI and tell him what's going on ASAP. Better to go up and nip this than to let things get out of control and end up having to start over.

How long are you on Flagyl for? Have you tried any medication other than Asacol? Some people do better on different formulations whether it be Apriso, Lialda, Colzal... Majority of us use rectal meds to keep things on track when we have a blip in the road.

On an aside, I couldn't taper off pred even with trying colazal, Lialda, cortifoam, Rowasa.. I have to start 6mp to get off prednisone. How long have you been on pred? More than a few months, you're getting into the terriroty where you may want to consider other options besides the 5ASAs.
Posted 1/5/2012 9:39 PM (GMT 0)
Slow and steady wins the race with prednisone. And its far too easy to go too fast when tapering. I did 20 to 10 and im surprise I eventually leveled out fine.

Another good technique that works is tapering from 12.5 one day, then 10 the next, then 12.5, then 10, etc... for a few weeks even if that helps you! But consult with your doc first! Good luck. The first few days of tapering is always a goddarn mess in the head and the body. :(
Posted 1/5/2012 9:42 PM (GMT 0)
Also, I just met with my doc the other day and for anyone tapering this could be pretty helpful:

Buy some Licorice Root (powder or tea) and take it/drink it as your tapering because its glycyrrhizinated and allows for the cortisol to stay in your system longer (so you can taper slower without having your adrenal glands to panic). I just got some, $2 bucks for a small bag of loose leaf. Super herb to the rescue! :)
Posted 1/7/2012 2:33 AM (GMT 0)
Thanks for all the replies. I spoke to my Doc today and he said if I needed to reup the pred then do so, he also prescribed Rowasa enemas which should help with the accidents. For those who use Rowasa, what are your experiences with it like?
Posted 1/8/2012 12:43 AM (GMT 0)
My current doctors recommended decreases of 10 mg of prednisone at a time. I have been off and on prednisone for 5 years now due to pyoderma gangrenous accompanying my uc. I was on 40 mg with my first pyoderma and went 40 to 30, then 30 to 20, then 20 to 15, 15 to 10, then decreased by 1mg a week until I was done. No ill effects at all. My second pyoderma was larger and more painful and I was on 60 mg for 3 months. Again I went slowly and suffered no ill effects. However, my last use of prednisone was precautionary and I only took 20 to start. Following physicians decreasing directions I was okay until I tried to go from 10 to 5. I didn't realize at first why I felt so crappy. Hurt all over, lethargic, every joint ached. Realized the only thing was the prednisone. Called my doctor and told her I was going back to 10 for a week then would taper 1mg a week. Got down to 2mg. Feeling ok, but had a pyoderma start, Went to 10 for a week and the potential pyoderma subsided. I'll go 9, 8, etc. and hope to get off completely this time. I am trying the probiotic VSL 3. A # of people have claimed it has put their uc in remission. It is an expensive OTC medication which makes it out of pocket. $70 for a one month supply. Has anyone on this forum tried it? When researching I found a site that compared many probiotics. Benebiotics was rated #1. Has anyone used it. It is also much more affordable, $30 for a one month supply. The same $ amount as Align, recommended by my gi doctor. And Align was at the bottom of the list. Go figure. We are all the same, but ohh so different.
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