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down to 2.5 mg of Pred and scared to make the next step

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Ulcerative Colitis
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Posted 1/10/2013 9:36 PM (GMT 0)
So I am down to 2.5 mg for about 5 days now. I was on 5 mg for a couple of weeks because i did not want to risk a relapse on the holidays. So my next step will be 2.5 mg every other day. I'm kind of scared. The only other thing I'm taking is the asacol. I did start taking Tumeric and American ginseng today though to maybe help me make it off of the pred. I also have been taking psyllium as well. For the last month I have good stools and only going 2 to 3 times a day(with some urgency). Have not watched my eating at all just doing what I always have.  Any thoughts or encouragements are welcome. This is my second try to get off the Prednisone.  
Posted 1/10/2013 9:53 PM (GMT 0)
Rectal meds? Or can't you use them?
Posted 1/10/2013 9:59 PM (GMT 0)
Have not tried and my GI has not offered. I'm hoping just the Asacol will work since me and Imuran did not get along. Rectal meds are something I'll keep in mind though. This was my first real flare although I think I probably have had mild UC for a year or two.
Posted 1/10/2013 10:58 PM (GMT 0)
i had a a 8 month predinison experience, thought was doing ok. when finally off, I started re-seeing symptoms within 2-3 weeks. Pred. only masks the symptoms, unless inflamation is gone, it will act up again. best way to get rid of inflamation is the anti-inflamatory (Asacol and/or rectal mesalamine retention enemas)

I say get off the pred. if all is good ! - great! if not - don't go back on.. try the rectals.
Posted 1/10/2013 11:07 PM (GMT 0)
There are 1 mg prednisone pills, can you ask your GI for a rx for them? You can taper just as slowly as you want...
Posted 1/11/2013 12:22 AM (GMT 0)
I agree with those who say you should try the rectal meds. If you have urgency, you still have a problem.
It's a pain but IMO you should try avoiding lactose and gluten for at least a few weeks or a month to see if there is a difference.
Also notice anything else that sets you off and stop eating it.

After you begin to heal, you may be able to reintroduce the foods you like in moderation. I remember when I could not tolerate most fruits and vegetables but, now I can eat them.
The best thing is that you may never have to take prednisone again.
It's worth the effort.
Good luck!
Posted 1/11/2013 12:26 AM (GMT 0)
Even if the pred totally gets rid of the inflammation it will still come back unless the asacol or other therapy keeps the inflammation at bay.
Posted 1/11/2013 1:29 AM (GMT 0)
Scum1 sounds like we are in the same boat. I started 2.5 mg today. I am doing a very slow taper and allowing my body to dictate when I drop. My mind is asking how much use is a mere 2.5 mgs so I am fighting the urge to just quit taking it. My body has been somewhat bleh today so I know that I can't just quit.

My GI has never prescribed or mentioned recal meds. I am really praying that the Imuran pumping through my body keeps the flares away.
Posted 1/11/2013 1:42 AM (GMT 0)
2.5 mg is well below a physiologic dose, and, frankly, I would assess its toxicity as pretty much zero. Toxicity from pred comes from cortisol in the blood above- especially significantly above - physiologic levels. Pred is seen by the body as cortisol. So I think it is pointless to rush getting off if you are diwn so low- you can take all the time you need. Just my opinion. That said, I agree with others that it would be great if you can find something such as rectal meds or whatever that may finally get you off altogether,

Post Edited (Probiotic) : 1/10/2013 6:46:45 PM (GMT-7)

Posted 1/11/2013 2:45 AM (GMT 0)
Think I'll give it a few more days then go to 2.5 every other day for a week. I am really hoping the Asacol will be enough to keep me in check. Yes 46&crashing seems we are in the same boat. I am fighting the urge to just drop the pred. I think the urgency is not to bad. I've had that for years but never even knew about UC. Just thought it was normal
Posted 1/11/2013 3:04 AM (GMT 0)
"Rectal meds are something I'll keep in mind though"

surprisingly, they work better in the butt !
Posted 1/11/2013 8:22 AM (GMT 0)
we only suggest rectal meds because they don't work....hello? You're freaking out about the prednisone taper, taking this, that, hoping. Again, rectal meds???

you're desperate. now's the time to actually listen.

q
Posted 1/11/2013 1:13 PM (GMT 0)

quincy said...
we only suggest rectal meds because they don't work....hello? You're freaking out about the prednisone taper, taking this, that, hoping. Again, rectal meds???

you're desperate. now's the time to actually listen.

q

 

Who said anything about Rectal meds not working? I said I was open to them in the future if needed? I never said I was desperate just scared. I am so close to being off the pred it is just that the last step is a little scary. If I have problems I'll get with my GI about the rectal meds.

Posted 1/11/2013 1:16 PM (GMT 0)
IMO, it'd be less scary to taper off pred if you were using the rectal meds. There's a WHOLE LOT OF DATA out there showing that dual therapy (oral + rectal) is superior to monotherapy. I don't think I've come across even a single study that shows dual therapy is not superior and there are a whole lot showing that it's better.
Posted 1/11/2013 1:30 PM (GMT 0)
I totally agree that they probably would be beneficial. I just don’t think at the moment I need them. I have an Appointment next month with my GI and will probably mention them then. In the meantime though I am doing well with no blood or mucus and only a couple of BMs per day that are well formed. I just worry that it all might change when I totally drop the pred. If I see a change at all I will call my GI quickly and suggest the rectal meds. What are the easiest to deal with choices in Rectal meds?
Posted 1/13/2013 3:14 AM (GMT 0)
So tomorrow I am cutting my 2.5 mg portion in half. Not an exact science but it should be between 1.25 and 1 mg. wish me luck
Posted 1/13/2013 4:27 AM (GMT 0)
Good luck! I dropped to 2 ish yesterday. Like you, I just keep cutting pills into portions.
Posted 1/13/2013 7:13 AM (GMT 0)
I just started Humira. My GI has me doing a pretty radical drop in prednisone. I went from 40 mg to 20mg in one week the the next week I got to 10 mg. then the next week to 5 mg. then 5 mg every other day for one week and I am off. He said if the d came back to call him. So far I have done two days of the 20 mg and no d. But I am scared.
Posted 1/13/2013 3:11 PM (GMT 0)
I guess he figures with the Humira you can get off the Pred quickly. I know if I get off the Pred and the Asacol is not enough Humira or rectal meds will probably be my next option. I won't be trying the Imuran again for sure though.
Posted 1/16/2013 3:01 PM (GMT 0)
I'm 4 days in on my 1.25 mg and so far things are going well. Sure they are not perfect but I don't ever expect to be 100% normal. I expect by Monday I will be completely off Pred!
Posted 1/16/2013 3:04 PM (GMT 0)
Not to harp, but I've had 100% normal bowel function for the past 3+ years. (ie, ask for the enemas!)
Posted 1/16/2013 3:56 PM (GMT 0)
What really is normal though? I have 1 or 2 formed BMs per day with no blood or mucus. I have some urgency but I have always had that for as long as I can remember even before I found out I had UC. I do have a Colonoscopy coming up in the next couple of months though. If I have inflamation still I will talk to the GI about Rectals.
Posted 1/16/2013 3:58 PM (GMT 0)
Normal, IMO, is that I'm exactly like I was pre-UC.
Posted 1/16/2013 4:03 PM (GMT 0)
I'd say I am pretty much there. Then again I might have had mild UC for years without knowing it. I have always had some urgency and somewhat loose stools. I think my stool is more well formed now than it has been for years. I'm not against rectals just not in a rush to use them unless i really need to.
Posted 1/16/2013 6:01 PM (GMT 0)
You're already where I'd never go....pred and Imuran. Thank you rectal meds! They should have been one of your first considerations, not last.

q
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