| Author |
Message |
laura
Member
Username: Lovemymom
Post Number: 14
Registered: 06-2011
| | Posted on Monday, December 19, 2011 - 10:58 am: | 
|
I was just hoping some lung patients could give me a general idea of the dose of prednisone they are on. I know different centers do things differently for different reasons, but it would be helpful for us to get an idea of what is working for others.
My mom was brought down to a 5mg maintenance dose, but when she switched centers(long story), they brought her up to 20, saying it's just the way they do it. she feels terrible on this level...
As always, I appreciate everyone's input!! What an invaluable resource!!
Sending you all a wish for a very healthy holiday season!!!! |
Tamara
Member
Username: Heppygirl
Post Number: 66
Registered: 05-2011
| | Posted on Monday, December 19, 2011 - 11:15 am: |
|
Wow 20 mg is really a lot!! Here in the Netherlands we have three centers. One (mine) is the most strict one, we are on 10 mg/day, my friend Marjolein was in another one, and she was on 5 mg, just like a lot of patients in that hospital. The third is also on 10 or 7.5 I believe... But 20 is really a lot, I was on 20 2 weeks after my transplant!
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
|
walt s
Member
Username: Desparado
Post Number: 53
Registered: 02-2010
| | Posted on Monday, December 19, 2011 - 11:58 am: |
|
I'M on 10 mg a day I have been told my Dr is the only on in my center that will go down to 5 mg. I haven't asked for a reduction only because everything is fine now, if I were to lower it and have rejection or some other bump in the road Id kick my self
Walt S
wa state
copd
dbl lung transplant 6/4/10
University of Washington Medical Center
|
|
Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 487
Registered: 01-2007
| | Posted on Monday, December 19, 2011 - 02:05 pm: |
|
When I first joined the transplant program at Columbia University Medical Center, they told me that many patients had been reduced to 2.5mg and some were on only half that.
After my transplant, I was told that I would be brought down to 5mg a day, but I had a few bumps in the road, along with a couple of acute rejections, so my dosage was lowered very slowly. I eventually got down to 7.5mg a day, which is what I'm taking now, but I believe that with many people they are brought down to 10mg and stay on that dosage. My guess is that I will stay at 7.5mg, but who knows? My fifth anniversary will be in a few months, and maybe I'll find a present of a lower dosage at that time.
I know that some people here have reported that their hospital weans them off of prednisone altogether, but this is not the case at mine.
|
meg9959
Member
Username: Meg9959
Post Number: 8
Registered: 01-2011
| | Posted on Monday, December 19, 2011 - 03:47 pm: |
|
Hi, I am currently on 5mg, but I had been down to 3mg and was told by one of my transplant Doctors. that I could go off completely. My friend was at Loyola in Chicago and she was so excited to be taken off Prednisone. Several months later she got sick and never recovered, I know the Prednisone might not have anything to do with her passing but since then I have refused to go off completely. I am back to 5mg daily since I got pretty sick, now that I'm feeling okay I've decided that I am going to stay at this amount. I do believe the Doctors will reduce according to how well you are progressing. I have great doctors at the U of C Hospital and I am 9.5 Years out.:-)
dx - bronchiectasis and CF
double lung transplant July 29,2002
transplant at Loyola Medical Center Maywood, IL
currently being treated at University of Chicago Hospital |
|
ajs
Forum Leader
Username: Ajs
Post Number: 697
Registered: 03-2008
| | Posted on Monday, December 19, 2011 - 04:34 pm: |
|
Laura,
My guess is that if you took an average of all the centers, the maintenance dose after a year or so would be 5 mg. That's where I am (since about one year). If I remember correctly, your Mom was tx'ed in February of this year? 20 after ten months is pretty unheard of, if she doesn't have refractory acute rejection of something.
Meg- It sure is always uplifting to hear from people like you. We've had way too much sadness around here the in the last year!
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
laura
Member
Username: Lovemymom
Post Number: 15
Registered: 06-2011
| | Posted on Monday, December 19, 2011 - 06:12 pm: |
|
Ajs, very good memory. She was transplanted in feb at upmc. She has had acute rejection and a class II dsa. However, upmc still had her on 5mg. The way it was explained to us is that her new center keeps most of its patients at 20mg (primarily because they don't do campath at induction) and very rarely goes below this. This just struck me as high and has pushed my "research" button.
My mom did have campath treatment in July for rejection . Her pfts have remained stable and her oxygen level is always around 98%. Her two setbacks are muscular and joint pain (particularly when prograf level gets high) and her weight. She actually lost 6 lbs when her prednisone level was increased and she is stuck at 82 lbs, despite good appetite.
Thanks again! |
ajs
Forum Leader
Username: Ajs
Post Number: 698
Registered: 03-2008
| | Posted on Monday, December 19, 2011 - 06:26 pm: |
|
Hi Laura,
Have they said anything about Rituxan for her DSA? Has worked well to keep mine in check. Is it just one? Do you know the 'titer' (%)? At Duke, they do everything they can to reduce or rid you of DSA's. Also, Chobani yogurt is a wonderful thing for protein, almost 30% RDA in a single one.
I Still don't get the 20mg. Especially if PItt, who knows what they're doing, had her at 5. Prednisone is 'short term magic, long term tragic', so I would work to get that reduced.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
John D
Member
Username: John_d
Post Number: 27
Registered: 09-2011
| | Posted on Monday, December 19, 2011 - 06:39 pm: |
|
My plan at Cleveland Clinic was to gradually reduce the prednisone from the starting point of 20mg/day to zero by the end of the first year. But in the fall of the first year I got a CMV infection, and although asymptomatic, had a difficult time getting rid of it. To help my immune system they took me off cellcept, and decided to leave me off it. CC doesn't like to have heart transplant patients on a single immunosuppressant, so they left me on a low dose of prednisone (2.5mg) per day, plus prograf.
Heart transplant
March 16, 2010
Cleveland Clinic |
|
Rocket Heart
Member
Username: Rocketheart583
Post Number: 608
Registered: 08-2007
| | Posted on Monday, December 19, 2011 - 09:05 pm: |
|
I was not on the dreaded pred for too long - about 3 years and was able to get off completely. Had to take a couple of extra AlloMap tests but it was worth it.
Rocket Heart
Tom Emahiser
Waterville, Oh
Heart Failure
Heart Txplt 1/26/05 University of Michigan |
|
Keith
Member
Username: Kbloomer
Post Number: 173
Registered: 12-2009
| | Posted on Monday, December 19, 2011 - 09:50 pm: |
|
Brigham and Womens has me on 5 mg per day. Tapered down to that sometime during the first year. Just reached my three year anniversary last month. This will be the lowest they put me on.
I think this is the same for the average transplant patient at the Brigham.
Bilateral Lung Transplant 11-12-08
Brigham and Womens Hospital, Boston, MA
Scleroderma, Pulmonary Fibrosis, Pulmonary Hypertension
www.caringbridge.org/visit/keithbloomer
Volunteer: RI Organ Donor Awareness Coalition, New England Organ Bank, RI Blood Center |
|
Louiesdad
Member
Username: Louiesdad
Post Number: 1
Registered: 12-2011
| | Posted on Wednesday, December 28, 2011 - 02:26 am: |
|
I had a single lung transplant in April of 2009, and started off with 10 mg of Prednisone twice daily. In 2010 it was cut to 10 mg 3 times a week, then 5mg 3/wk, and that lasted until July of this year, when I was taken off of it (Hooyah!) Everything is sailing along smoothly now. |
jeepers
Member
Username: Jeepers
Post Number: 1
Registered: 12-2011
| | Posted on Friday, January 06, 2012 - 09:10 am: |
|
I am 4 month post op heart transplant, my clinic starts a person off on a weight based formula, I was on 40mg day one post transplant. My weight was 90 lbs. I am now on 10mg. I was unable to tolerate cellcept so I was switched to Myfortic which at a dose of 720mg 2/day gave me severe diarrhea as well as lowered my WBC to a point where I was taken off it completely, I did not want to stay on prednisone for life, so I offered to try myfortic again at a childs dose of 180mg 2/day. This has gone well so my clinic will drop the prednisone dose by 2.5mg every couple of months.Providing everything goes as planned.......... |
|
