tapering off prednisone - what do YOU do? :)

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wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/1/2010 8:46 PM (GMT -7)   
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?


33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 

Post Edited (wednesday2007) : 3/1/2010 8:53:20 PM (GMT-7)


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/1/2010 8:51 PM (GMT -7)   
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.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/1/2010 8:59 PM (GMT -7)   
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? 
 
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/1/2010 9:13 PM (GMT -7)   
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.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/1/2010 9:26 PM (GMT -7)   
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!

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/1/2010 9:34 PM (GMT -7)   
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)

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/1/2010 9:58 PM (GMT -7)   
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. 
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


Headbanger
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 3/1/2010 11:09 PM (GMT -7)   
I've been cut by 5mgs. every 4 days. Worked for me.

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 3/2/2010 4:03 AM (GMT -7)   
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.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/2/2010 8:32 PM (GMT -7)   
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.
 
 
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


HW7582
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 10/16/2010 10:39 AM (GMT -7)   
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.

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 10/16/2010 10:54 AM (GMT -7)   
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?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/17/2010 6:19 AM (GMT -7)   
Guys just fyi, this is a old post. Thanks,
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
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