Want to get off prednisone

[Alaskaliving]

Anyone transplanted live donor recipient who has been able to get rid of prednisone meds?

[PostivelyJo]

I’m trying to. Had my deceased donor transplant in 9/19. My large and excellent team as a group say no but have mixed views as individuals. … I mentioned to one who would be happy to reduce prednisolone dose that a heavy man is given the same maintenance dose as a thin woman - 5mg and he said so that is the paediatric dose too and that there is no way to measure levels … I find it alarming that a drug as strong as this can be given to such a wide range of body types without a test to see what it’s going …I intend to keep pushing ….

[blackkat2]

Yes, I asked my neph to take me off prednisone about a year after (live donor) transplant. Now I'm +4 years and no problems so far. Still on all the other stuff, of course.

[DexterLab]

Got my living donor transplant 2/7/2019. My center didn't do Prednisone as a part of the med routine. Tacro and cellcept, and the dosage reduced over the first year. I had BK and a UTI and they stopped the cellcept and added Prednisone until the infection was gone. Then back to the usual meds and no Prednisone. So I guess it depends on the preferences and experience of your transplant center.

[Transplant314]

I was on Prednisone while in hospital post transplant. When I left to go home continued tacrolimus and cellcept but was taken off prednisone.

[WYOAnne NKF Ambassador]

I was taken off Prednisone about 10 years post-transplant as my bones were starting to lose there density - osteopenia. I am now 22+ years post-transplant and all is good. I continue to take Cellcept and Cyclosporine.

[Daijb]

My wife was on Prednisone for a few months after her transplant but asked for it to be stopped as it was giving her bad tremors; she has had previous experience of steroids doing that. She is still on Tacro and Mycophenolate. The Tacro still gives some tremors. Long term use of steroids is not good unless vital.

[EricaTO]

First, of course discuss his with your clinic doctors; there might be a reason for you continue on it. In my case, I had read in different transplant groups that many people were never on or are now off Prednisone, so I requested that I get off as well. I was told that, 1) most of the studies on removing Prednisone only look at the effects up to one year and don’t know risks beyond that, and 2) my 89% PRA level means that taking me off Prednisone would be too risky. I knew neither of these things.