Prednisone and the magical 20mg....

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Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 6/28/2009 5:27 AM (GMT -6)   
Does anyone feel like each and every time they try to taper you'll get to a certain point and it's just a complete reversal? I've was able to successfully taper to 14mg and then the trouble started...so low and behold i'm back up to 20mg. It's odd because at 20mg I feel completely normal...why can't we just stay at 20mg? bah humbag.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 6/28/2009 5:49 AM (GMT -6)   
Yep I'm in the same boat...I'm having to stay at 20mg at the moment too, but even on that I'm still getting symptoms. They won't put me up any higher because I've been on fairly high doses of steroids for too long and they want to get me off them. What a pain!!

22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
20mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/28/2009 7:40 AM (GMT -6)   

The reason why you can't or shouldn't stay at 20mg is because the long term side effects of prednisone are irrereversible and damaging.  Long term use is considered any dose for over 4 months.  The problem with pred use is that the damage from prednisone usually shows up after the patient stops taking it.  If you are having problems getting off pred successfully and have been on it for more than 4 months, it's time to have a talk with your GI about the next options.

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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/28/2009 7:42 AM (GMT -6)   
Yes, this is why I've been on it for 6 months now. We started at 10mg or 20 mg (can't remember) and eventually I was up to 60mg before it would do anything at all...and last time at 60mg, it was not even working very well. It stopped the bleeding but nothing else. I'm down to 40mg now and HAVE to get off it.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/28/2009 8:03 AM (GMT -6)   

After 5 months on prednisone I am down to 5 mg. today.  My new doctor says - after a week on 5 mg. I will go to 10 mg. every other day and then 5 mg. every other day or a week each.  This gives your body the chance to do its own thing on day off.  So far I have no problems tapering as I can see.  I am on Cortifoam and Anusol two or three times a day (whichever I can manage).  Seems to be helping!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/28/2009 8:18 AM (GMT -6)   
I was on it for about 8 months and able to maintain a 5mg dose for the last ~2 months. I was then put on weekly doses of humira but the frequency of movements increased and everyone keeps mentioning surgery as the option. I started taking 20mg for a day, then 15, now 12.5mg... I don't want to take it any longer than another 2-3 days. I can't seem to stay off prednisone so surgery is coming very near :-/

Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 6/28/2009 9:51 AM (GMT -6)   
It seems like prednisone is the only medication that is known to make everyone feel "normal".  Why can't these drug companies create a drug that has the effects of prednisone but isnt has damaging to our bodies if on it for a long period of time?
 
 
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Diagnosed with PSC: 3/9 --now taking Urso
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09 - 100mg - started 6/11/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
 
~~~Praying for a cure~~~~
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 6/28/2009 1:45 PM (GMT -6)   
I just tapered off Pred totally....below 25mg my UC symptoms came back, and I experienced bouts of joint pain especially in my knees... I have been off completely for about a week....my Imuran is kicking in and I am feeling ok....still dont feel nearly as good as when I am on 40+mg, but I suppose I will deal with it....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 6/29/2009 2:34 AM (GMT -6)   
Shadam.....I feel "normal" on the meds I'm taking and no side effects of pred.
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 6/29/2009 5:59 AM (GMT -6)   
The end of next month will mean I have been on pred for 1 year. 6mp worries me because of the side effects, I can honestly say that prednisone hasn't really given me any (crosses fingers). I am a professional athlete and something like 6mp sounds (nasuea, low energy levels) like a death sentence....at the very least prednisone makes/keeps me "normal".
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....


WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 6/29/2009 8:49 AM (GMT -6)   
Shadam said...
It seems like prednisone is the only medication that is known to make everyone feel "normal". Why can't these drug companies create a drug that has the effects of prednisone but isnt has damaging to our bodies if on it for a long period of time?



I have been taking Entocort with great success. It is "prednisone light" and does not have nearly as many side effects, since it remains confined to the intestinal track. I am surprised that it is not prescribed more often for UC.
50 - male - in North Carolina near Asheville
Asacol 12/day
Cortenemas
Citalopram (anxiety/depression)
experimenting with acupuncture and Chinese herbs


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/29/2009 9:28 AM (GMT -6)   
The reason you can't take Prednisone long-term is that it has very serious, irreversible side effects. Things like cataracts, diabetes and bone destruction.

I was switched to Entocort after I couldn't taper off Pred. I got the song and dance about it not being systemically absorbed. It was wonderful - no moon face, no voracious appetite, no joint pains. Now I have a virtually destroyed right shoulder joint because the steroids caused the bone to die and start dissolving.

I don't want to panic anyone, but that's why steroids are not appropriate for long-term use.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/29/2009 11:09 AM (GMT -6)   
Apetro, as a professional athlete you really should be just as worried about the long-term side effects of prednisone. It could damage your joints enough to where you are no longer able to compete.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 6/29/2009 11:42 AM (GMT -6)   
I agree fruit girl, it is a catch 22 right now. Stay on pred and feel okay while risking long term damage, or get off of pred and use 6mp/imuran and probably not be able to train or compete. Not to mention my window of time will be ticking till my early 30's. Somedays I just feel really lost.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/29/2009 12:15 PM (GMT -6)   
And who says you are going to have side effects with 6MP? I never had any side effects with that drug and I was on it for 1.5 years. I think it's risky to stay on prednisone. You might try connecting with people who have long term damage from pred and get their advice. I think all of them would say if they had chance to reverse the decision to stay on it they would.

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


SwollenColon
Regular Member


Date Joined Nov 2006
Total Posts : 190
   Posted 7/1/2009 10:50 PM (GMT -6)   
Apetro, I've been using 250mg Imuran daily for a couple years now. I don't get the fatigue and nausea. Imuran and Entocort are the cocktail that keep me normal for the biggest part of the year.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 7/2/2009 4:26 AM (GMT -6)   
     I have osteoporosis due to prednisone usage but then I am an old lady and had osteopenia before ever going on prednisone...small frame.  I suffered a compressed fracture of the lumbar spine about four years ago after a fall on my tush.  I do a lot of walking, love to exercise and take Calcium with vitamin D.  I refuse Fosamax, don't need ulcers in my esophagus, have enough in my rectum.
     Unfortunately, my UC flares are starting to occur more frequently.  After bein diagnosed in 1998, my flares would pop up every two years or so and always in the fall.  Well, after 2003 (a stressful year for me), the flares started every year either in spring or fall.  Now, I am in a flare and just got out of a seven month flare which ended Nov 1st of 2008.  They just couldn't get me off the prednisone last year....seven months is a LONG time.  The doctor is trying to keep my prednisone at a lower level this time.  I started at 30 (he actually wanted 20 but it did nothing), five weeks ago then I lowered it by 5 mgm weekly.  Well, I am stuck at 20 and still bleeding with urgency.  When this happened last year, he upped it to 40 for five days with 5 mgm decrease for five days, etc.  He also increased my 6MP to 100 mgm.  Guess I better give him a buzz this am.  I know what he is going to say..."Chris, you tell me what you are going to do so I can write it in my record."
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/2/2009 9:55 AM (GMT -6)   
Apetro--I am very experienced with both Azathioprine and Prednisone and you should definitely be giving SOMETHING a try to be getting off pred. I know we are all attacking you on this point :) but we are all just trying to share our mistakes so you don't make them! good luck.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 7/2/2009 8:23 PM (GMT -6)   
I hear you all, I’ve scheduled an appointment to discuss my other options. Oh wouldn't it nice to be "normal" again?
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....

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