What's the likelihood?

[Metalangel28]

What's the likelihood of rejection without the use of steriods for a deceased donor kidney?

[Rerun]

You should only be on them for a short term.  6 months or so.

But if you are on them longer you have to pick your poison.  No Steroids or a Healthy new Kidney....

[Woody72]

This is a great question!   One that I could do with an answer to myself. 

After 15 months of amazing post-transplant life, I've been told my extremely painful leg/hip is avascular necrosis, and this has likely been caused by the steroid Prednisalone -I was only on a low dose, 5mg/d but they have now reduced this to 2.5mg/d, but my consultant has advised that the MDT think we should continue low dose steroid long term.  I know that some units in the UK do not prescribe steroids long term, but my unit does.  Apparently the jury is out as to what the best way forward is - some research points to long term (small dose) steroids prolong the life of the transplant.  I don't think there is actually a definitive answer to your question, but I'd be interested to know what other have been told.

[MooseMom]

I asked my tx neph about a non-steroid protocol, but she was very adamant that the chances of keeping a transplant were greater with steroids than without.

I know others have different stories and that other centers are happier using the non-steroid protocol, so if you feel strongly about this issue, then this is a question you can ask the various tx centers you visit.

I'm almost five years out and have taken pred for all of that time.  After beginning with 30mg per day, I was quickly weaned down to 5.  I am aware of some of the long term side effects, so I incorporate weight bearing exercise into my weekly activities.  I have not had any problems so far with my meds, but I do realize that this might not always be the case.

You can't be a transplant patient and not expect to take risks.

[Simon Dog]

My neph told me that when was a renal fellow, they had a patient who was doing well on 5mg prednisone for years.  The attending decided "what difference can 5mg make?"; discontinued the prednisone; and the kidney promptly failed.  As a result, he is reluctant to change anything that appears to be working well.

[nursey66]

My husband was on 5 mg for the whole 11 years of his 1st transplant, when it failed he asked about getting off the prednisone , his Neph told him to stay on because after being on it so many years , his body was no longer producing it anymore , apparently the body makes a small amount of the hormone on its own, and stops making it when it is supplied by a pill  long term. So he stayed on for the 2 years before getting the 2nd transplant and is still on the 5 mg.

[Metalangel28]

Thank you for your replies. I ask because I am not on steroids. I was taken off them 2 weeks post tx. The 2 weeks I was on them for me was awful as steroids effect bipolar disorder greatly. I am happy to not be on them but am wondering how long my kidney will last without it.

[coravh]

I don't know what the odds are, but here's my story. My half-cousin gave me a kidney in 2002. We were a 1/6 match and at this point (knock on wood) I have not yet had an episode of rejection. I got my pancreas (deceased donor) in Feb 2008 (so coming up on pancaversary # 9) and again - knock on wood - I have not had an episode of rejection there either. And I've been without steroids my entire transplant life. Oh, and when I had CMV and was in the hospital for 6 months on nothing but rapamune and 250 mg of cellcept once per day, I was also rejection free at that time.

Take your pills on time and do your best to stay healthy. You cannot predict rejection, you just do the best you can every day and work to deal with what comes.

eta:  it's true that if you've been on pred for a long time it can be impossible to come off. Taking prednisone for a long time can shut down your own production of certain hormones similar to the pred, which you need to live.