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tapering off prednisone - what do YOU do? :)

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Posted 3/2/2010 3:46 AM (GMT 0)
I have been on prednisone since the beginning of December, and my Remicaide has stopped working.  I am starting Humira this week and am starting to taper off pred.  I am down to 50 mg (from 60) and know I need to take it slow, but what kind of schedule so you all do when you taper off?  I have done it before but them was on a medicine that was actually working and now am afraid that the pred is keeping the inflammation down - but I can't take much more of the side effects.

I am following a Macrobiotic, meat and dairy free diet, lots of supplements, running and yoga - I am feeling a LOT better.  But I can feel the prednisone wrecking my body.

Does anyone go down 5 mg every few days or do you want a whole week?  Like this week 50, next week 45, next week 40, etc or can you go any faster?  Does anyone ever alternate days to see how they feel (like 50 one day, 45 the next, if it doesn't work, back up to 50 etc)  Like I said, I have been on prednisone several times before so I understand I need to take it slowly but would like to speed it up a bit if I can.

Any suggestions?

Posted 3/2/2010 3:51 AM (GMT 0)
I was ever only as high as 40mg, but this is what my doc told me to do:

40
30
20
15
10
5

Each step was a week's time.
Posted 3/2/2010 3:59 AM (GMT 0)
Thanks - I was on 40 mg before then my dr bumped it up to 60 when I wasn't getting better.  I have osteopenia AND osteoporosis in my hip and spine (as shown from bone density scans).  I do everything I can to stay healthy but my dr loves prednisone and would put me in the hospital on IV steroids if I said ok.  I had to say no the last time. 

The panic attacks and anxiety are really what is getting me, plus I can feel it in my bones.  The puffy face and chipmunk cheeks I can deal with, because there is nothing I can do about them now.  It keeps me humble. :)

If I am feeling better can I move a little faster? 

 

Posted 3/2/2010 4:13 AM (GMT 0)
You'd probably want to talk to your doc (or his/her nurse) to see if you can taper more quickly. Going too quickly is not safe.
Posted 3/2/2010 4:26 AM (GMT 0)
Right, I will talk to him about it but like I said, he loves Prednisone.   I would really like to hear other people's experiences with their doctors and what they do.  Thanks though!
Posted 3/2/2010 4:34 AM (GMT 0)
My GI had me taper from 60mg at 5mg every 3 days.

That stuff was AWFUL but that was as quickly as he was willing to go =) (I'm only at 5mg and holding now)
Posted 3/2/2010 4:58 AM (GMT 0)
5 mg every 3 days sounds a HECK of a lot better than 5 mg every 7 days. :)  At that point it would be 10 weeks before I would be done!  That would be almost half a year I would be on Prednisone!

Thank you for your input - I am going to try to go down another 5 mid week.   If it doesn't work I will go slower.  I have been trying to keep track of my body's response to the doses and it seems like within 15 min of taking it my heart starts to race.  Also, sleeping is apparently for the birds, which I had forgotten about. :)

THANK YOU, I don't know anyone else with Crohn's and I love this forum. 

Posted 3/2/2010 6:09 AM (GMT 0)
I've been cut by 5mgs. every 4 days. Worked for me.
Posted 3/2/2010 11:03 AM (GMT 0)
My tapering down is usually 5mg every 5 days, but this time I went up in between with the predsol retention enema being 20mg, but my tablets still tapered by 5mg every 5 days.
Posted 3/3/2010 3:32 AM (GMT 0)
I think it really depends on the person and how long you've been on the steroids.

I am having a TERRIBLE time tapering, myself, so I have been going excruciatingly slowly only to have to go back up--devastating. Seriously.

However, if you haven't been on them that long, you can probably do something like

50

40

30

A week each

Then taper by 5's for a week each until 10, then either continue or go a little slower, depending how you're doing.

 

Posted 10/16/2010 5:39 PM (GMT 0)
I was put on prednisone yesterday for minor respiratory inflamation (basically had fluid in my lungs that was hard to cough up) my dr. put me on the medicine at 20mg 3 times a day for two days then 20 mg 2X a day for 2 days and then 20mg once a day for 2 days. will this cause me any effects from tapering? will this hurt my adrenal glands? I started researching this because the medicine is making my heart feel fluttery (which dr. said it could) but i HATE the feeling! please help... i just took my 20 mg morning dose and was giong to only take one more today instead of 2 more.
Posted 10/16/2010 5:54 PM (GMT 0)
I tapered by 5mg each week until I was done. I was on 40 in June and went 40, 35, 30, 25, 20, 15, 10, 5, 0. Took 8 weeks to get off, but a week was pretty good for me. My Crohn's had gotten really used to the Pred, so everytime I steped down I got sick about 2 days after. Then I'd feel bad for ~2 days and feel better. Though towards the end, I felt worse longer (like ~4 days on 5mg). I'd probably have taken a longer taper, but I didn't have anymore Pred and was between doctors...

I'd be careful about tapering too fast since you've been on it for so long. Your body stops making stress hormones while on Pred, so when tapering you need to give your body time to rewaken your adrenal glands or you run the risk of getting sick...

If you're doing a macrobiotic diet, have you thought about SCD?
Posted 10/17/2010 1:19 PM (GMT 0)
Guys just fyi, this is a old post. Thanks,
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