Prednisone taper experiences

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/5/2007 8:28 AM (GMT -7)   
Just went over my labs today w/kidney doc, my kidneys are responding well to the prednisone (4.7grams a day of protein loss to 3.2 a day) and I think it's gotten even better since my lab last week.
 
UC has not been responding to the predisone, or so I thought....I started the hydrocorisone enemas a week ago and today I have had 4 encouraging bm's (not much blood) after my 4 morning bm's w/blood, did start the cipro yesterday too.
 
the kidney doc asked how I was feeling on the pred and I was like, well I bawl my eyes out (i'm not a crier) and he said it would be okay for me to do 60mg one day and 40mg the next day, then 60, then 40 and so on..that sounds like a huge jump to me.  So I did 55mg today and will taper myself, b/c I am scared of what if the pred is helping my UC and it could be a lot worse??  Also got a hemi, so happy about that!
 
Please let me know how you tapered......
Thanks!
Beth, 32
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 10/5/2007 9:10 AM (GMT -7)   
Hey! I have tapered a couple of times. I usually taper 5mg every 7-10 days. Now don't be suprised if you see a surge in symptoms for a few days after you taper. It is just your body adjusting.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

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Co-Moderator UC Forum


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 10/5/2007 10:46 AM (GMT -7)   
I have tapered 4 times. The first three, my GI had me taper by 5 mg every 7 days. This last time, he had me taper by 10 mg every 7 days. I noticed more issues with tapering this last time. I assume it was because it was a faster taper.
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/5/2007 10:59 AM (GMT -7)   
The taper from above 10 mg is fairly easy and I wouldn't worry about the 60mg to 40mg recommendation. The hardest part of prednisone taper (on the body) is when you start reducing from 10mg to 0mg.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Bekjm
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 10/5/2007 1:59 PM (GMT -7)   
I have tapered many times at 2.5 to 5 a day and it was fine and yes the whole your body adjusting thing goes up and down. This past year I had a terrible pregnancy that resulted in beign on steriods for the last 3 months of my prenancy and I was tapered 5 mg weekly. They were thinking possible c-section due to stuff and well needed me off the prednisone before I dilever because healing is so terrible (especially being cut open like that) when you are steriods. Oh my gosh either I tappered to fast or entered into a new field of my disease. I ended up being on pain killers longer then my last c-section and as a result of the steriods and possibly tappering to fast. I have cushings and adrenal fatigue. I just felt like sharing this becuase I think the 60/40 thing is crazy and you are right to do 5 at a time. Doctors don't want you to know the actual things that will happen to you when on steriods. So sad it is that way so luckily you have us! Too many times we find ourselves self perscribing because each UC case is a personalized thing.

UCJuly2007
Regular Member


Date Joined Aug 2007
Total Posts : 95
   Posted 10/5/2007 2:13 PM (GMT -7)   
Gastro had me taper 5mg every week until I got to 15mg then I am to cut 2 1/2mg each week.
  I am down to 10mg of pred.  Yeah!  I am almost off, been on pred. since July 18.  I still don't know if what I am experiencing is still flaring, but I know I am a lot better than I was.  Most of the time there is no blood now, and I haven't had full blown diarrhea in weeks.  Yippee! :-)
Smiles,
29/F Diagnosed UC July 18, 2007 
Meds: 6 Asacol 400mg Tab
         2 1/2 5mg Prednisone total 12 1/2mg (down from 40mg)
         1/2 30mg Tylenol #3
         1 1000mg Canasa Suppository
         1 Calcium 500+D
         1 Cerovite Vitamin and Mineral Supplement
         1 325mg Ferrous Sulfate
 
 


Bekjm
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 10/5/2007 2:24 PM (GMT -7)   
Sorry about the spelling errors above on my other post.  To put more details into min towards the end I was doing 2.5 too.  What symptoms are you having I wonder if they are similar.  Even if you aren't bleeding and have diarreah there is still something that can be going on still.  It is the nature of the beast I swear.  Ok I just might be preaching to the choir here.  But what are your other symptoms?

Survivor of UC since 1997
Currently on: Asacol, Lialda and ocassionally prednisone
A million different vitamins would take to long to list!
Here are the crucial ones for me!
omega 3's
liquid Calcium
folic acid
vitamin c or any antioxidents
Seriously don't need kidney stones again!!!


Bekjm
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 10/5/2007 2:27 PM (GMT -7)   
Ok seriously I can spell I keep typing fast and getting a head of myself.  What am I saying I am a terrible speller!!!
Survivor of UC since 1997
Currently on: Asacol, Lialda and ocassionally prednisone
A million different vitamins would take to long to list!
Here are the crucial ones for me!
omega 3's
liquid Calcium
folic acid
vitamin c or any antioxidents
Seriously don't need kidney stones again!!!


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 10/5/2007 2:31 PM (GMT -7)   
I am down to 5mg per day and have like 4 more days left of pills. I have tiny barely visible spots of blood now, but I am still wanting to come off. My UC is so much better that I eat like 1 sugary thing a day and I know I should stop that. So I WIll stop the sugar and come off prednisone finally.
I do have tremendous aches that I didn't have before. my back, hips and knee. BUt I think eating better and drinking extra water helps my joint pain.
Good news: my Acne that was all over my upper body and face is almost completely cleared up.
                                                                                         
27/M/TX
Severe Colitis (pancolitis) since January 9, 2005
currently:  I must say Under Control
RX/day:  5mg prednisone; 2400mg Asacol; 150 Azathioprine
OTC: Probioplus DDS; seldom use vitamins & other natural treatments
FYI: 3 weeks of SCD diet and caprylic acid put and end to my 3rd and worst flare ever. (But i'm not in SCD anymore)
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 10/5/2007 2:40 PM (GMT -7)   
I can taper from 40mg to 30mg in one week, but after that I drop by 5mg every 7 days. My UC stops within 24 hours of getting on pred, and never returns even once tapering (though I am steroid dependent, so my body really LOVE the pred). my guess is that if you are having UC problems at 60mg, than the pred isn't working for yuo, as opposed to kind-of working. but, that's just my thoughts. in any case, hang in there, the pred symptoms do lessen, I promise. and if you can handle such a dramatic taper, the good news is that the symptoms will lessen more quickly. I don't know how yuo're feeling, but if you have the energy to exercise, I HIGHLY recommend it. It is the only thing that keeps me from going totally insane on pred. feel better soon.
29/Female/NC
Pancolitis dx 3/07
*12 Asacol/day
*100mg Imuran/day (steroid dependent)
Various vitamins, probiotics, fish oil.
Engaged: June 1, 2007


Bekjm
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 10/5/2007 4:22 PM (GMT -7)   
ok the aches and pains is sort of like cushings syndrome. Google it and read about it! It is side effect of steriods. Your body has had a pretend cortisone in your body for too long and so it doesn't really try to produce its own resulting in the aches and pains. Your body isn't naturally helping itself with swelling or pain in general anymore. But you are correct with excersise and water and eating healthy and most importantly time you will notice a difference. It has taken me 6 month to feel better and I am still in need of improvement. I have come a long way though.
Survivor of UC since 1997
Currently on: Asacol, Lialda and ocassionally prednisone
A million different vitamins would take to long to list!
Here are the crucial ones for me!
omega 3's
liquid Calcium
folic acid
vitamin c or any antioxidents
Seriously don't need kidney stones again!!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/5/2007 6:01 PM (GMT -7)   
I tapered by 10 mg every 7-10 days (making sure I was stable before tapering) until I reached 20mg. Then I tapered by 5mg every 7-10 days (once again making sure I was stable) until I reached 10mg when I began tapering by 2.5mg. I am steroid dependent, so I had a really rough time getting off the pred.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

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