Prednisone/corticosteroids

[blackkat2]

Hello. Anyone reading this who had a kidney transplant and is NOT taking prednisone or other corticosteroids as part of their anti-rejection meds? I've been hearing/reading about the possibility of going steroid-free and I'm considering raising the possibility with my doctor. (I currently take tacrolimus, mycophenolic acid, and prednisone.) Any info/experience would be really helpful. Thanks.

[Donaldson0007]

I am allergic to all steroids and have not been on them since leaving the hospital, they used a low dose with a rapid taper during surgery and post, and Ive not been on them since. I take prograf and myfortic only. Of course, everyone is different but I think your Dr should be open to trying to get you off them if that is what you want unless it puts you at risk. Good luck to you.

[CNeb]

I was on Prograf and cellcept for a little over a year. My protocol then required me to be on prednisone after my 1 year biopsy since my body was seeing the kidney. Not technically rejection, just that at the cellular level they could see changes. Understand not everyone falls under just prograf and cellcept. I don’t know if your center does a biopsy after a year. Mine is one of the few to do so, but the reason they do it is to adjust the protocol, since everyone is different. I hope to get off prednisone after another biopsy next year, but if I need to be on it so be it. I want this to be my one and only donor kidney.

[KathleenMA]

I was on prednisone after surgery but the protocol was to slowly wean off of them so I was done about 10 weeks after surgery. The meds we take have a lot of side effects and prednisone's side effects are not fun. I would definitely talk to your doctor about weaning off. A lot of hospital programs are steriod-free now. I'm on tacrolimus and cellcept now.

[DexterLab]

I am 12 weeks post-transplant and never was given steroids. I get prograf and cellcept. So far, so good. We have adjusted the prograf levels some. Docs said they are not doing steroids as part of their standard protocol. Good luck!

[JeffSherman1958]

I had my transplant in 1999 and was on Prednisone forever. There was, I think, a change in protocol a while ago, and I was taken off the steroids. It took six months for me to feel OK (joint and muscle pain, seemingly random), but I'm glad I did. I would definitely talk to your doctor about it, as I do not think it is standard treatment protocol anymore. There maybe other reasons why you are on it, though, so check!!!

[WYOAnne NKF Ambassador]

I had my transplant in 1999 and prednisone, Myfortic and Neoral were my drugs to take forever. I had a lot of problems with GI issues and after a couple of years later I was able to get off the prednisone. Today, I take name brand Myfortic and Neoral only. I have never had a rejection episode and am doing wonderful with a creatinine of 0.9.

Good luck to you!