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Prednisone tapering question....

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Posted 10/11/2008 12:40 PM (GMT 0)
Hello guys and gals, lately i've been doing really well and have been "normal" while tapering off prednisone. That was until I dropped from 20mg to 10mg, i've been tapering down since August (originally at 60mg). At 10mg I can still function but have flare like issues such as more mucus, blood in the stool. Any tips? Should I just try to ride it out at 10mg and hope for the best?
Posted 10/11/2008 2:34 PM (GMT 0)
Hmm. How long have you been on 10 mg? I know that once I get under 20 mg, I do have slight flares initially within the first few days of my cut, and therefore I hold on for about 5 days to see if its improved. In your case, if its only your first day or 2 on 10, give it another day or 2.
If you start having ALOT more movements,D, blood, then call your doctor right away. Sometimes you have to re-up pred again to your last known good level(meaning no flare), wait to calm down again, and then drop it by 5 mgs or slower at a slower rate(every 7-10 days).

Pred can be very hard to come off especially if you have a nasty flare. For me I had to go onto 6mp in order to get off pred. I was stuck on it for a year.
Posted 10/11/2008 6:41 PM (GMT 0)
I've been on 10mg since monday.
Posted 10/11/2008 7:55 PM (GMT 0)
     Ask your GI doctor if he thinks you should be on any rectal meds along with the prednisone.  I am now tapered down to 20 mgm of prednisone, since Monday, down from 40.  On prednisone for the better part of six months now, unable to stay off the dreaded stuff.  However, when the doctor started me at 40 two weeks ago (he usually starts me at 30), the bleeding ceased after only two days on the 40 and it has been held at bay and I am enjoying "normal" once a day bowel movements with no blood.  Thank goodness for small pleasures huh?  You can see the myriad of pills I take on the list below.  Also add Cipro and flagyl now, since I developed an abscess behind an upper left tooth.  Thought it was a wisdom tooth, now think it is the molar.  Scheduled to have that sucker pulled on the 27th, after we return from our camping trip.
Posted 10/12/2008 3:38 AM (GMT 0)

Apetro said...
I've been on 10mg since monday.

Are you fully flaring and is it getting worse as the days go on from your starting point at

10 mg on monday?   If your symptoms are coming back pretty decently and your getting more urgency, going more times as the days go on and your not improving at all, then 10 mg isn't cutting it and you will probably need to go up to at least 15 and maybe even 20 again and come down slower.  Now I am not advocating you medicate yourself at this point and you should definatly consult with your doctor.. but that is the likely scenario.

Vin

Posted 10/14/2008 12:30 PM (GMT 0)
Well....low and behold probably the worst morning ever, urgency accompanied by the most blood and mucus i've seen in a very long time. I called the doctor, he said that i'm going up to 40mg a day for the next 4 days and start tapering again. I have an appointment with him on the 20th.... :(
Posted 10/14/2008 1:53 PM (GMT 0)
((((((((((((((((big hug Apetro)))))))))))))))))))
Posted 10/14/2008 3:29 PM (GMT 0)
I am doing a super slow taper, once I got down to 20mg I cut it by 5mg every TWO weeks, then when at 5mg, did that for a month then did 5mg/2.5mg alt days for a few weeks and here I am today.

I am also on the pred for another reason but I also notice that after I taper a few days later I get some symptoms that go away after a day or so. I think going by 5mg every two weeks really helped.
Posted 10/14/2008 3:35 PM (GMT 0)
my doctor is kind of doing a fast taper. I go from a week on 10mg to nothing on Wed. I have been on it since Sept. 1st, so not a super long time.
Posted 10/14/2008 3:42 PM (GMT 0)
I did a very long, slow taper. I also started at 60, was at 40 for a couple of months, and finally got off after a year, with a couple of minor blips here and there. Imuran was what, I believe, allowed me to finally get off the prednisone and have a normal life again. Might want to check with your doctor about that. I also wasn't tolerating Lialda well.
Posted 10/14/2008 6:02 PM (GMT 0)
Usually listening to your body is the best way to taper. after being on pred a few times and researching how it works in the body with regards to UC and other functions of the body, you can kind of 'feel' your way through it so that you know when to cut, how much to cut, and when to hold or bump it and then how much to bump it. this way your not on it too long of a time, and also your not on it too short of a time. but you will have to know what you are doing and have your doctors support of this approach as well.
Posted 10/14/2008 6:40 PM (GMT 0)
My appointment on the 20th is to see what my options are for another drug to use for remission. I was on 4.8gm/Lialda (max dose) and it really made my symptoms worse, after reading the side effects of 6mp (i've been told im having a blood test to see if I can take it), I wonder if maybe 4.8gm was too much? I'm not superfond of the idea of getting on 6mp....
Posted 10/14/2008 9:31 PM (GMT 0)

Apetro said...
My appointment on the 20th is to see what my options are for another drug to use for remission. I was on 4.8gm/Lialda (max dose) and it really made my symptoms worse, after reading the side effects of 6mp (i've been told im having a blood test to see if I can take it), I wonder if maybe 4.8gm was too much? I'm not superfond of the idea of getting on 6mp....

Yea I don't think anyone is fond of the idea of 6mp.  I had been on it before for about 2 years and did fine on it though.  No side effects whatsoever.  I stopped taking it because i stupidly thought i found the 'cure' for my illness which i believed to be food related.  WRONG!  well i just went through the worst flare of my life and i am going back onto the 6mp.   I know there are alot of people who do very well on 6mp and are on it for a long long time, but for my personal opinion, i think i am just going to get this flare under control and get the surgery and be done with all the guess work.    I don't want to take the chance that I'll get an adverse effect from 6mp one day, or that it won't keep my colitis under control, or any other complications. 

if your blood work comes back good, then it will probably be wise to try the 6mp at least.  it will get you off of steroids, and then you will at least have a clean slate for a while. 

Posted 10/17/2008 5:25 PM (GMT 0)
I feel great today, I think my system is finally getting back to normal....ahhh pred remission.
Posted 10/20/2008 12:03 PM (GMT 0)
in australia we can get 1mg pred, would be very surprised if you couldn't get it in the US. would definately offer more options and slower tapering.
Posted 10/20/2008 7:50 PM (GMT 0)
Try dividing your doses up into like 3 or 4 doses a day. I found that if I only took 1 or 2 divided doses, as soon as I got close to my next dose being due, I would start having symptoms. My doctor thought I was crazy but it works best for me to keep the drug at a constant level in my system. If I was on 20 mg, I would take 5 mg./4x a day. When I was down to 10 mgs., I would take 2.5 mg./4x a day. I think when I was on 15 mg., I would take 5 mg./3x a day.
Posted 11/7/2008 12:57 AM (GMT 0)
Okay so i finally finished my predisone from tappering from 40mg to nothing now!!
the side effects i got were just little tiny zits on my lower back but most of them are now gone, also on my face,
but just on my forehead and around my neck, but you could never see them in the mirror, it was bizarre, only when i would get out of the shower i would be able to spot them.
i was wondering how long does it take for the side effects to ware off from my body, along with the acne side effects?.. it seems like to a rash than acne.
Posted 11/7/2008 3:47 AM (GMT 0)
That is great Lavi! I'm @ 30mg now and will be on 25mg starting on saturday....all is well!
Posted 11/7/2008 4:08 AM (GMT 0)
I am at 12.5 now back from 25 mg. Hoping to get back past that darned 10 mg barrier once again!
2 weeks ago i hit the 10 mg barrier and bingo...slammed! One more time....

Vin
Posted 11/7/2008 8:25 AM (GMT 0)
The first reference below is in the context of a sarcoidosis infection however it does discuss several of the issues that we suffer from as we seek to taper our prednisone doses.

Medicines work on a half life. The half life of prednisone according to the article below is 4 hours so that means that over a 24 hour day it halves 6 times. So if you start with a 20mg dose in the morning so it goes 0-4=20, 5-8=10, 9-12=5, 13-16=2.5, 17-20=1.25, 21-24=.087. So you can see that over the duration of the day, the prednisone concentration in your body reduces quite significantly. I think this sort of explains Glamourgirl's recommentations.

I found that an extra but smaller dose of steroids taken after 12 hours seemed to help my symptoms. But when i asked my GI about splitting doses I was told that it produced an effect - this might be better explained in the second reference. But this was a bit inconsistent with what happens when you are getting IV steroids in hospital, i was given 4 IV doses a day and not one big hit. The second article also says that the effect lasts from 18-36 hours. Maybe it depends on the person and doses should be more tailored to the individual.

There is a lot of literature out there about prednisone and maybe thats part of the reason why GIs are reluctant to get into long discussions on it.

Like Vin, I am not advocating self medication but am offering some observations and ideas which you could discuss with your GI.

for tapering discussions -
http://www.sarcinfo.com/weaning.htm

or if you are into the more technical discussions http://www.medsafe.govt.nz/Profs/DataSheet/a/Apoprednisonetab.htm
Posted 11/7/2008 6:07 PM (GMT 0)

glamourgirl said...
Try dividing your doses up into like 3 or 4 doses a day. I found that if I only took 1 or 2 divided doses, as soon as I got close to my next dose being due, I would start having symptoms. My doctor thought I was crazy but it works best for me to keep the drug at a constant level in my system. If I was on 20 mg, I would take 5 mg./4x a day. When I was down to 10 mgs., I would take 2.5 mg./4x a day. I think when I was on 15 mg., I would take 5 mg./3x a day.

I would really have trouble remembering to take it all those different times! Anyway, that would probably be good if you were on a lower dose like 20. But when the side effects are really bad at 40-60 mg, taking it all at once in the morning minimizes the side effects. That's why it's done that way, is my understanding.
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