Don't want to type your concern or question, talk to a patient survivor on the phone! HOPEline 800-579-1970
October 31, 2014, 05:47:38 PM PDT *
Welcome, Guest. Please login or register.

Login with username, password and session length
News: Please be sure and sign up for our patient newsletter "Live & Give" and our online e-mail RENALERT to stay informed of RSN activities. Sign up at www.RSNhope.org     
 
   Home   Help Search Calendar Login Register RSN Home The HOPEline RSNhope store  
Pages: [1]   Go Down
  Print  
Author Topic: Coming Off of Prednisone After Many Years  (Read 5356 times)
0 Members and 1 Guest are viewing this topic.
refurb
Sr. Member
****
Posts: 805
Offline
« on: June 20, 2010, 02:32:43 AM PDT »

I would be curious if anyone can share their experience of weaning off prednisone after an extended period (at least 10-15yr) of time and what it was like??

Refurb

View Profile Logged

Lupus/ CKD 25 years
Transplanted 12/15/99
old_fool
Full Member
***
Posts: 250
Offline
« Reply #1 on: June 20, 2010, 08:57:25 PM PDT »

Refurb,

Keep looking at kidney resources but also see if there are other diseases that use Prednisone for treatment.  We have a neighbor who has a bunch of conditions.  She was taken to the hospital for hallucinations related to Prednisone last week.  They were giving her Prednisone for pulmonary and lung issues... I don't know what.

I know all steriods get used for arthritis including Prednisone,  Have a look at http://drugs.emedtv.com/prednisone/prednisone-uses.html for a more complete list.  If you look for support groups on these diseases, you might find someone who has dropped Prednisone... perhaps even another lupus patient.

Cheers,
~fool

View Profile WWW Logged

~old fool
zero mismatch transplant Jan 2010
Angie
Hero Member
*****
Posts: 2310
Offline
Canadian Transplant Recipient
« Reply #2 on: June 21, 2010, 03:26:39 PM PDT »

This is a very good topic because you can NOT come off Prednisone suddenly but must be WEENED off of it. It is important to NOT stop Prednisone on your own but with the guidance of your doctor.  It is possible but needs to be with them working with you. You can mess up your adrenal glands (if you still have them) if you come off too quickly. If you are going to quit, you HAVE to taper - unless you want to risk really messing yourself up.

Ongoing topic on this I found here that I will give with this warning: "These people are just talking about this and not all of the posters are informed of risks. Beware any information you get online and ALWAYS check with your doctor"

http://www.healingwell.com/community/default.aspx?f=17&m=1089039

View Profile WWW Logged

My Pictures | KK Mall | http://kidney.ca/quiz



PD/HD: 6.75 yrs
2nd Transplant 2007 Sept 30th (started working Nov 14)
refurb
Sr. Member
****
Posts: 805
Offline
« Reply #3 on: June 22, 2010, 09:03:23 AM PDT »

oh yes I know all about weaning off as i have been on all sorts of doses over the past 22years...probably an expert on the medication but i was just asking if anyone had weaned completely off after more than 2 decades....and how that process was for them

yes many illnesses use prednisone......

thanks for responding.

Refurb

View Profile Logged

Lupus/ CKD 25 years
Transplanted 12/15/99
old_fool
Full Member
***
Posts: 250
Offline
« Reply #4 on: June 22, 2010, 08:44:52 PM PDT »


This site is amazing!  Great articles on lots of issues.  THANKS FOR MAKING ME AWARE OF IT.

~fool

View Profile WWW Logged

~old fool
zero mismatch transplant Jan 2010
refurb
Sr. Member
****
Posts: 805
Offline
« Reply #5 on: August 04, 2010, 04:35:35 PM PDT »

thank you so much for that link.....

Refurb

View Profile Logged

Lupus/ CKD 25 years
Transplanted 12/15/99
old_fool
Full Member
***
Posts: 250
Offline
« Reply #6 on: August 14, 2010, 07:14:54 PM PDT »

Based on the information here, I cut my dose 10 days ago from 5 mg to 2.5 mg .  I also moved to a warmer climate.  I have had less pain in my right hip when I lay down.  Don't know if the lower prednisone contributed or not but I will keep making notes. 

Cheers,
~fool

PS I am 7 months post transplant.

View Profile WWW Logged

~old fool
zero mismatch transplant Jan 2010
getlife
Thank you to my donor family for the 'Gift of Life' !
Hero Member
*****
Posts: 4622
Offline
So Thankful!
« Reply #7 on: August 16, 2010, 03:58:12 PM PDT »

Great Fool!  Making progress.  Hopefully next time you post here you will be completely off of it.  I have enjoyed reading your posts on fb.  Sounds like a whole new life for you and your family.

View Profile Logged

Live! Like there's tomorrow! 
http://www.youtube.com/watch?v=9K8-9mXjU8o

CKD 40 Years!

Update!  Had my transplant on June 22, 2011!
Woohoo! A sincere thank you to my donor family.

2 previous transplants, latter lasting 18 years.
Returned to hemodialysis 1999. 
Now transplanted!
michhemoman68
Jr. Member
**
Posts: 248
Offline
Let God Bless Us All With Health And Happiness!
« Reply #8 on: August 31, 2010, 09:26:01 PM PDT »

I am not sure of the validity of this information, but it seems to me that I recall being told when I started it by my Uncle Bill that if I was forced to stay on it continuously for too long I would be unable to ween myself off.  I have always wondered since he had been on Prednisone for over 4 decades, whether or not he could come off of it successfully.

View Profile Logged

One Day at a Time!
getlife
Thank you to my donor family for the 'Gift of Life' !
Hero Member
*****
Posts: 4622
Offline
So Thankful!
« Reply #9 on: September 13, 2010, 05:37:23 PM PDT »

I am not sure either. When I was on prednisone for 18 years...I was only on 5 mg. daily.  When I lost the transplant, and it was removed, they stopped the prednisone, but slowly.  I did fine. 

View Profile Logged

Live! Like there's tomorrow! 
http://www.youtube.com/watch?v=9K8-9mXjU8o

CKD 40 Years!

Update!  Had my transplant on June 22, 2011!
Woohoo! A sincere thank you to my donor family.

2 previous transplants, latter lasting 18 years.
Returned to hemodialysis 1999. 
Now transplanted!
Pages: [1]   Go Up
  Print  
 
Jump to: