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Author Topic: Prednisone/Side Effects Question  (Read 4669 times)
kellyt
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« on: January 31, 2009, 09:10:03 AM »

On what dosage of Prednisone did you begin to see the side effects start to diminish?   I'm passed the ravishingly hungry phase.  And I'm passed the "mean" phase.  But my face is still really fat and it's starting to depress me.  I have two more weeks of 12.5 mg and then I go to 10 mg for a month or so, then slowly dropping from there.

Is it at 10 mg or less than 10 mg that side effects start to diminish?

Thanks.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
monrein
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Might as well smile

« Reply #1 on: January 31, 2009, 09:55:26 AM »

This isn't the answer you want to hear Kelly and besides everyone's different so your experience and those of others might be different also, but mine only started to diminish after many years and I was never on really high doses of pred.  I'm still on 5 mg daily and my face is less round now that I'm back on D but I've never regained the face and bone structure that were mine before all this stuff began.  I tried to adjust to my new face although I never really liked it and focused on all the energy I had to do things.  In photos, I often don't recognize myself in the sense that yeah, I know that's me but that's not what I think I look like in my mind's eye.  So, once the roid rage wore down a bit, I just tried to smile and feel joyful and hoped that people would remember more of how I am than how I look.  I also gave up on electrolysis even though I could get it free and just shave every day with a good electric razor (side effect of years of cyclosporine).

Challenge after challenge, I tell ya.  You sound so nice that frankly, other than yourself of course, I bet no one cares how you look as long as you're feeling healthy and strong.   :cuddle;


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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
rose1999
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« Reply #2 on: January 31, 2009, 10:01:34 AM »

.  I tried to adjust to my new face although I never really liked it and focused on all the energy I had to do things.  In photos, I often don't recognize myself in the sense that yeah, I know that's me but that's not what I think I look like in my mind's eye. 

Monrein, whenever I see your phots I always think of you as beautiful, I love your smile, you have beautiful eyes and your inner beauty shines through. I'm truly shocked to hear you say this!   :cuddle;

Kelly doesn't this just show you that beauty is in the eye of the beholder, you are a lovely person, please don't judge yourself by your looks - we don't judge  you that way, we just want you as well as you possibly can be  :cuddle;
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kitkatz
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« Reply #3 on: January 31, 2009, 10:03:37 AM »

What she said!  :grouphug;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
MandaMe1986
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« Reply #4 on: January 31, 2009, 10:15:56 AM »

I have been off of prednisone for almost 6 months and I am just now starting to lose all that stuff. The round face is still very much noticeable.  Prednisone is a very evil drug.  And truthfully can have much worse side effects. Just hang in there it dose get better with time.

If it helps any, most of us know what its like   :)

So we can be chubby faced, mean ladys who eat everything in site together  :yahoo;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
Wenchie58
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Always carrying the big silly grin!

« Reply #5 on: January 31, 2009, 11:01:33 AM »

Kell.
  Mine started to diminish at 10.  Not gone, but going away.  I just got reduced
to 7.5..I'll let you know what happens.
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
kellyt
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« Reply #6 on: January 31, 2009, 12:55:47 PM »

Thank you.

I was on Prednisone early on when I was diagnosed for about 1 year, but I can't seem to remember when face went back to "normal".  I didn't have a skinny face before surgery, but I can't stand to look at my self in the mirror these days.  It totally sucks that a transplant can make you feel so good (physically), but that you have to go this this horrible phase of feeling really bad about your self (physically) due to the Prednisone.  I can't wait to be off of it!

Maybe I haven't totally gotten out of the "mean"/"emotional" phase.  Apparently, I'm still emotional... :'(

Thanks again.   :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
kidney4traci
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« Reply #7 on: January 31, 2009, 01:00:39 PM »

Sorry sweetie.  Not looking forward to that part myself...
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
Wenchie58
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Always carrying the big silly grin!

« Reply #8 on: January 31, 2009, 01:48:25 PM »

Kelly.

    I still have the moody, emotional stuff....and by the time I get over the prednisone stuff..should be about time to hit menopause!  Ahhhhhh life....at least we are here to live it, good with the bad!

Just remember.....the face will pass....but we want to do or take whatever we need to to make sure
that our new kidneys stick around for a good long time!!
« Last Edit: January 31, 2009, 04:49:27 PM by Wenchie58 » Logged

Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
G-Ma
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« Reply #9 on: January 31, 2009, 02:03:38 PM »

what rose, wenchie and everyone else said...monrein and wenchie you are both gorgeous.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Razman
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« Reply #10 on: January 31, 2009, 04:45:46 PM »

Challenge after challenge, I tell ya.  You sound so nice that frankly, other than yourself of course, I bet no one cares how you look as long as you're feeling healthy and strong.

  When we first met (and every time after) I have never noticed anything out of the ordinary. In fact I think that your husband is very lucky to have such a beautiful wife.  Even when I've dropped by the center when you are on dialysis you still look great.  Its the smiles and friendship that are much more important.  You are a great inspiration and hope that others will take your advise.

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monrein
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Might as well smile

« Reply #11 on: January 31, 2009, 05:04:36 PM »

 :shy;  Thanks Dave  And everyone else too.    :flower;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
kitkatz
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« Reply #12 on: January 31, 2009, 05:34:52 PM »



So we can be chubby faced, mean ladys who eat everything in site together  :yahoo;
Quote



I am not on prednisone and I am one of these already!  :2thumbsup;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Wattle
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« Reply #13 on: February 01, 2009, 03:22:12 AM »

Kit took the words right out of my mouth!!

I have chubby cheeks and have been told I am moody ( although I strongly disagree) and I have never been on Prednisone! Some of us are just born "lucky".   :P

Being on PD has killed any self esteem I was clinging too, so I fully understand you Kelly. I might have to take down all mirrors when I finally get a transplant.  Or I could start wearing REALLY big eighties hair and that would make my face look smaller.  :P
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Hilrose
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Me and my sister 09/08

« Reply #14 on: February 01, 2009, 04:21:17 AM »

Kelly, I feel the same too, I'm on 7.5 alternate days, and I'm hoping to come of them soon, I will keep you posted.

One love
H
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hilrose- hemodialysis patient since April 2007
Transplanted from living donor March 2007 and failed
Kidney rejected August 2008 no longer considering removing
No longer on waiting list 2008

Neverless very happy to be alive!
kellyt
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« Reply #15 on: February 01, 2009, 08:50:29 AM »

We'll get through this together, Hilrose!   :clap;

Wattle, I already HAVE big 80's hair!    :rofl;   Although, the Prograf is doing a fine job at thinning it out.    :stressed;  (as well as me pulling it out like this little avatar).

I'm still gratefull for my kidney!   :2thumbsup;      But it was my New Year's resolution to try to find something to complain about every day.   ;)
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
MandaMe1986
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« Reply #16 on: February 01, 2009, 08:51:59 AM »

  But it was my New Year's resolution to try to find something to complain about every day.   ;)

Now that might be a New Year's resolution I might be able to keep
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
kellyt
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« Reply #17 on: February 01, 2009, 09:00:31 AM »

I've stuck with it for 32 days!   :rofl;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
paris
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« Reply #18 on: February 01, 2009, 10:47:25 AM »

Kelly, I like that resolution!  One year my resolution was to eat more doughnuts!  Just trying to keep it real!
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
thegrammalady
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« Reply #19 on: February 01, 2009, 11:21:39 AM »

prednisone is a nasty drug. and it's not just used for kidney patients. i've used it on and off for years for asthma. even though i didn't like the effects, i've always been grateful once i start wheezing i can go for months. i know the prednisone is keeping me breathing. but then, according to my youngest daughter, i'm ignoring the 800 pound blue gorilla in the corner. sorry bekah it's not the gorilla that's the problem its the elephant sitting on my chest.

the last new years resolution i made was to never make another new years resolution. so far so good. however, doughnuts........now that just might be worth...................ah well, maybe not.
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
MandaMe1986
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« Reply #20 on: February 02, 2009, 07:11:24 AM »

thegrammalady 800 lb gorilla?  :rofl; How fun

And yeah I have been taking prednisone for 8 years - a the year I was pregnate and a few months after that.  That drug is the  >:D
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
thegrammalady
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« Reply #21 on: February 02, 2009, 12:16:35 PM »

thegrammalady 800 lb gorilla?  :rofl; How funAnd yeah I have been taking prednisone for 8 years - a the year I was pregnate and a few months after that.  That drug is the  >:D

yes, and i've been told i make mountains into molehills. but as long as the gorilla cleans up his own mess i just ignore him, after all there isn't much that can be done about him so there's no point in obsessing over him.
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s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
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