Prednisone

[mallory]

Thanks, Rerun.  Good advice.  I am so anxious to get off this freaking Prednisone.  My catheter is still bleeding (it was put in on 11/15) and I think it's because my tissue is so bad from the Prednisone.  I know Prednisone does a lot of good things (as my doctor keeps reminding me), but it does a lot of bad things, too.

[Bette]

I am so glad I read this.  My transplant stopped working in September and I am still on 5mg a day of Prednisone.  My doctor has not even started weaning me off of it.  She did stop the prograf because my PD catheter wasn't healing well.  I am only taking the prednisone and rapamune.  I am not in a hurry to get off of it because I still make a lot of urine and I want to avoid the fluid restriction as long as possible,

[BigSky]

They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in.  Went from 10 mg down to 0 in 10 days.  It was kinda rough, really rough,  the first month because of the joint pain but I am glad I no longer take it.

[mallory]

They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in. Went from 10 mg down to 0 in 10 days. It was kinda rough, really rough, the first month because of the joint pain but I am glad I no longer take it.

BigSky,  How long had you been taking Prednisone when they stopped it?  I sure would like to get my dose lower, but I've been on Prednisone for about two years, wouldn't that make a difference?

[BigSky]

Was on it for just over 12 years.

[Rerun]

They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in.  Went from 10 mg down to 0 in 10 days.  It was kinda rough, really rough,  the first month because of the joint pain but I am glad I no longer take it.

That is just plane WRONG!  Joint pain plus hallucinations, and jerking awake!!  Didn't you have any of that??

[BigSky]

:shock:  :roll:

That is just plane WRONG!  Joint pain plus hallucinations, and jerking awake!!  Didn't you have any of that??

Nope, only had the joint pain and that was it.

[jedimaster]

I'm in the long waiting list for transplant but familiar with presisone as I have Chron's....last time it took a hole year to get rid of it....every month we'll reduce a bit until we got to take one day yes and the next none....I'm telling you....it takes time. Just cutting it is horrible and you feel super sick....this is my 2 cents worth of info....good that you are feeling better though

[angieskidney]

Mallory.  One mg a month.  So tell your doctor that you want to go down to 7mg for 1 month then 6mg for one month then 5.  Don't drop from 7.5 to 5.  .......S - L -O - W........ 

Seems different docs do it differently. Sometimes you have to be really strong and tell your docs what you feel comfortable with and work with them. If they feel you are working against them however they call you noncompliant.

[coravh]

I am so glad I read this.  My transplant stopped working in September and I am still on 5mg a day of Prednisone.  My doctor has not even started weaning me off of it.  She did stop the prograf because my PD catheter wasn't healing well.  I am only taking the prednisone and rapamune.  I am not in a hurry to get off of it because I still make a lot of urine and I want to avoid the fluid restriction as long as possible,

If your graft has now failed, you should be off the rapa to ensure wound healing. I am thinking about a pancreas transplant and they have been quite clear about taking me off my rapa for the first few weeks. Rapamune plays hell with wound healing. When I first had my kidney transplant, they took me off it for a week too so I would heal better. You actually  heal better on prograf than you do on rapamune.

Cora

[okarol]

I spoke with Jenna's transplant coordinator yesterday and she reiterated that
their transplants are "steroid free" - so I hope this is the best way to go?
~Karol

[angieskidney]

I spoke with Jenna's transplant coordinator yesterday and she reiterated that
their transplants are "steroid free" - so I hope this is the best way to go?
~Karol

I wish they had that in my transplant hospital... I don't like all the side effects and if they can do it without then GREAT!! 

[BigSky]

I wish they had that in my transplant hospital... I don't like all the side effects and if they can do it without then GREAT!! 

I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient.  Those patients that have low levels are eligible for steroid free transplants.  However steroids are still given for anywhere from 2-6 weeks depending on the patient.

[Zach]

I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient.  Those patients that have low levels are eligible for steroid free transplants.  However steroids are still given for anywhere from 2-6 weeks depending on the patient.

Yeah, they advertise one thing, but reality is another.

[angieskidney]

I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient.  Those patients that have low levels are eligible for steroid free transplants.  However steroids are still given for anywhere from 2-6 weeks depending on the patient.

Yeah, they advertise one thing, but reality is another.

Wow!! I didn't know! Thanks for informing us! 

[paris]

My transplant center does a 4 day protacol with prednisone. The surgeon said mine would be alot longer because of being sensitized patient and needed pheresis.  Just depends on the center and the patient.

[angieskidney]

My transplant center does a 4 day protacol with prednisone. The surgeon said mine would be alot longer because of being sensitized patient and needed pheresis.  Just depends on the center and the patient.

I have never even HEARD of pheresis before this web board!

[paris]

The process has been around for awhile and used with other diseases - ie, Crohns disease.  It is fairly new with transplants, but if you have a high PRA (several of us on this site) it is the only way to get a transplant.
When I was first diagnosed, I put plasmapheresis in Google and founds lots of research at Johns Hopkins and Mayo Clinic. I go to a large transplant center(UNC) and Duke U. is 30 miles away and neither of them do this procedure with transplants.  Check out any of Jill D.'s post--she is at Mayo right now going thru the process and hopefully will get a kidney from her sister Dec. 5th. 

[angela515]

I took prednisone from the age of 12 to 18, then I was off of it until I had my transplant in 1999, then I tok until my transplant failed in 2004. I have been on many different doses, some high, some low... some SUPER high and IV, of course always weened off slowly a little lower each month or every 2 weeks depending on how high of a dose I was on and how low we needed to get. I took prednisone for RA (Rheumatoid Arthritis) and SLE (Lupus), then for kidney transplant. Only thing that ever happened to me from prednisone is the "moon face" which at first went away in the begining, but then after being on it for years, it just stayed and never went away.. that sucked but i'm used to the round face now. I never had hallucinations or anything when taken off fast or abruptly. I did get bone deterioration in my ankles from being on it so long and so high of doses... luckily I can still walk after my ankle fusions because my surgeon was AWESOME... he worked with the Jacksonville Jaguars football team when they were in their first few years. Anyways.. I still take 5mg once in awhile... sometimes every other day.. sometimes once a week.. for my RA, so when my joints hurt I take one... since I moved to Iowa, they hurt more... so I take it more often.. but never had withdrawls or anything.. that I know of or am aware of.

[angieskidney]

There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! 

[angela515]

There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! 

Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. 

[angieskidney]

There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! 

Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. 

You sound like me .. I was on it since I was 16 til I ... oh wait I am still on it

[angela515]

There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! 

Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. 

You sound like me .. I was on it since I was 16 til I ... oh wait I am still on it

  I have a hate/love relationship with prednisone. I hate it for what it can and does do to ya... but I love it b/c how it helps ya at the same time...    Crazy.    We have a lot in commin, being sick at such a young age and blah blah, however our kidney failure is from different things, too bad we didn't know each other when we were kids, woulda made my teenage years easier to actually know another teenager going through it also... 

[Crobake]

I've been on prednisone for 23-1/2 years. I got a transplant when I was 21y/o on 5/22/83 (Mothers Day! ) I agree with the love/hate relationship with this drug. It has caused me a whole slew of problems. It has also helped my kidney survive for all these years (transplant currently failing). I still look forward to hopefully getting another transplant despite the bad side of immunosuppression. Dialysis, Transplants and all they involve don't scare me, but dieing  prematurely does. I will do WHATEVER I have to do to prevent that!

[mallory]

There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !!

That's just great.  I'll finally get off the Prednisone and I'll end up looking like a bloodhound...