Steroid Free Immunosuppression for Transplant

[mrhecht]

Does anyone have experience or knowledge of steroid (prednisone) free (sparing) immunosuppression therapy post transplant. I was told by my center that I would not be a candidate for it since my PRA was 42%. My neph really wants me to avoid the prednisone because of my bone condition (osteodystrophy) from so many dialysis years.

I have seen mention on several transplant threads of plasmapheresis and IVIG therapy to reduce high PRA levels in and now I am curious if that would be a possibility for me in order to be eligible for the steroid sparing protocol.

Anyone???

[okarol]

My daughter had a kidney transplant 3 weeks ago. She had plasmaspheresis (due to a mild
B cell crossmatch on a final high sensitivity screen) the day before and day of the surgery.
She also had IVIG the day of surgery, and on day 5 and day 21. They gave her 4 days of
ATG and 3 days of prednisone. She is no longer on prednisone. She takes Prograf and Cellcept.
This was her first transplant and her PRA was not a problem.

[Jill D.]

I had a positive-crossmatch transplant on Dec. 5 because I had a very high PRA. I had 2 weeks of plasmapheresis and IVIG before Tx and for 2 weeks after Tx. I am on a tapering schedule of the prednisone - I'm on week 10 post-transplant and am taking 9mg daily, and at this point I will decrease by 1mg daily until I am down to 5mg/day. Ask your neph if a low dose like this will be a problem.

[stauffenberg]

After having received a transplant in August, 2005, I have been on 5 mg prednisone a day since January, 2006, but unfortunately, even that small amount is a problem, since now I have to take medications to combat osteoporesis and have to take eyedrops to deal with nascent cataracts.  There are some protocols which eventually eliminate prednisone entirely, but there is always a 25% chance of acute rejection if that is done.  My nephrologist has left it up to me whether to take that chance, but for me even a 25% risk of acute rejection, which seriously reduces the lifespan of the kidney, even if the acute rejection is corrected, is too great.

[angieskidney]

I have to stay on Prednisone for the rest of my life because they took out my Adrenal Glands as well as my kidneys. Well, everyone's situation is different.

[angela515]

My first transplant in 1999, my dr's put me on Prednisone for the reason of "well you have Lupus and you took Prednisone for that, so this way you can still take it and keep your Lupus in remission"  Whatever, My lupus went into remission because it attacked and killed my kidneys, it did its job, and once done, it went in remission. It wasnt because of Prednisone.

This time around I am Steroid-Free, thank god! At least my surgeon this time is smart and uses his brain.. im so glad he didnt come up with the same response as my last surgeon did.

I do know that my PRA was 0%, so... I know that was a big factor in considering me for Steroid-Free...either way, i'm glad to not be on Prednisone, although I still have some in my cupboard, I can take to help my ankle once in awhile... 

[mrhecht]

My first transplant in 1999, my dr's put me on Prednisone for........
This time around I am Steroid-Free, thank god! At least my surgeon this time is smart and uses his brain.. im so glad he didnt come up with the same response as my last surgeon did.

I do know that my PRA was 0%, so... I know that was a big factor in considering me for Steroid-Free...

How in the world did you keep a PRA of 0%?? Wait, that sounds like I don't believe you and I DO believe you, I'm just astonished! #1 - you've already had a transplant. #2 - you have children, right? Both transplant and pregnancy create antibodies, so how does your PRA stay 0%? I've never had a transplant, yet my PRA is 42% due to (they tell me) one pregnancy and 2 blood transfusions in 1989 & 1990 (pre-Epo). I'd be really interested if you would ask your docs how your body made that happen!!!

[angela515]

Very good question, and I will ask them at clinic this Wednesday as I do not know myself. I was shocked to find that out since of course the previous Transplant, and the 2 pregnancy's. I'll let you know what they tell me!

[BigSky]

Does anyone have experience or knowledge of steroid (prednisone) free (sparing) immunosuppression therapy post transplant. I was told by my center that I would not be a candidate for it since my PRA was 42%. My neph really wants me to avoid the prednisone because of my bone condition (osteodystrophy) from so many dialysis years.

I have seen mention on several transplant threads of plasmapheresis and IVIG therapy to reduce high PRA levels in and now I am curious if that would be a possibility for me in order to be eligible for the steroid sparing protocol.

Anyone???

It may well depend on the center.

I checked at the center they refer us to and they said they do not use such therapy to reduce pra levels.

My class 1 PRA is 45%
class 2 PRA is 79%
This is with no blood transfusions and one prior kidney transplant.

[renal30yrs]

I understand Stanford pioneered this protocol.   Unfortunately its not applicable for repeat transplants at this point.

[BigSky]

I understand Stanford pioneered this protocol.   Unfortunately its not applicable for repeat transplants at this point.

Actually there was a study done in 95-99 in Denmark that used this protocol and they used it in a group of first and second transplants.  Seems to me the US is just dragging its feet like usual.

[renal30yrs]

I understand Stanford pioneered this protocol.   Unfortunately its not applicable for repeat transplants at this point.

Actually there was a study done in 95-99 in Denmark that used this protocol and they used it in a group of first and second transplants.  Seems to me the US is just dragging its feet like usual.

FDA and AMA.

[livecam]

I did it not because of an antibody issue but because I didn't like the side effects of prednisone.  I was off at just under two years post transplant and haven't looked back.  All is well and there are no more little white pills to worry about.

[kelliOR]

I did it not because of an antibody issue but because I didn't like the side effects of prednisone.  I was off at just under two years post transplant and haven't looked back.  All is well and there are no more little white pills to worry about.

livecam, did you ever have any episodes of rejection or  show any nephrotoxic effects from your immunosuppressants prior to going off prednisone?

Kelli

[livecam]

No, one episode thought to be rejection about 3 weeks after transplant turned out to be dehydration.  They called me back to the hospital to check it but had no doctor available for a couple of hours.  They had already put an IV line in my hand but hadn't connected it to anything.  I said to hell with waiting around for two hours.  We headed straight over to the City Deli for a grilled reuben with IV in hand.  A later ultrasound was negative.   No signs of nephrotoxicity which would probably show up in creatnine. 

[livecam]

Let me add if ever in San Diego you'll want that with the big pickles, potato salad, and coleslaw...very good.

[mrhecht]

I did it not because of an antibody issue but because I didn't like the side effects of prednisone.  I was off at just under two years post transplant and haven't looked back.  All is well and there are no more little white pills to worry about.

Did you request to be weaned off the prednisone or was it an option offered by the program you went through. And how many years has it been with your transplant since?

[angela515]

Wow a 2-year decrease to stop the Prednisone... well either way i'm glad you got off of it. Im thankful everyday that my surgeon had me on it 2 or 3 days then completely off of it...

[livecam]

I had to request it.  My situation is a little odd.  I'm an HMO member but my HMO doesn't do transplants, they send patients out for them.  After the transplant center finishes 3 months of followup you go back to the HMO neph.  He didn't want to let me stop but said if the original transplant center (there were two) would ok it he would go along with it.  I had to get permission from UCLA which wasn't the place the transplant actually occured.  They said sure, no big deal.  It has been almost 3 1/2 years since it was stopped.

[okarol]

At Jenna's recent follow up the neph (who is different than the surgeon we have been dealing with) said she would like to consider adding a low dose of prednisone as a precaution. I was a little confused as the surgeon had said they would not be in favor of that. So I told her to double-check with the surgeon, and if he concurred, then maybe Jenna would do it. Well the surgeon defiantly did not concur. His feeling is that steroids can cause more problems with side affects, especially in a young person, and he wants to hold off using it unless it becomes necessary. So they had a little pow-wow and I guess the surgeon won. Our local neph also is in favor of having a little prednisone on board, but he said let's wait and see how she does for now.

[Rerun]

A low dose isn't that bad.  Let's say 5mg or less.  More than that and it does cause side-effects.  But, you take the bad with the good.  Bottomline is do whatever it takes to keep the kidney because the alternative is dialysis. 

Hope and pray you don't have to take the prednisone.  I wish they wouldn't even tell her she might need it.

[livecam]

The steroid/no steroid issue really has a lot to do with the personal preferences of the physicians involved.  The old school guys tend to think you've gotta have steroids in the mix or else expect rejection and that is essentially what I was told by mine.

More progressive physicians seem at least to be open to no steroid protocols.

There isn't a ton of data out there on long term graft survival with no steroid protocols because they just haven't been around for that long.

You gamble a little by going no steroid but I kind of think that the gamble is worth it.  Steroid side effects suck and newer immunosuppressants tend to work well with and without steroids in the mix.

[angela515]

I had to request it.  My situation is a little odd.  I'm an HMO member but my HMO doesn't do transplants, they send patients out for them.  After the transplant center finishes 3 months of followup you go back to the HMO neph.  He didn't want to let me stop but said if the original transplant center (there were two) would ok it he would go along with it.  I had to get permission from UCLA which wasn't the place the transplant actually occured.  They said sure, no big deal.  It has been almost 3 1/2 years since it was stopped.

I think that sucks that a lot of our medical care desicions are based off of our insurance.. ya know?

At Jenna's recent follow up the neph (who is different than the surgeon we have been dealing with) said she would like to consider adding a low dose of prednisone as a precaution. I was a little confused as the surgeon had said they would not be in favor of that. So I told her to double-check with the surgeon, and if he concurred, then maybe Jenna would do it. Well the surgeon defiantly did not concur. His feeling is that steroids can cause more problems with side affects, especially in a young person, and he wants to hold off using it unless it becomes necessary. So they had a little pow-wow and I guess the surgeon won. Our local neph also is in favor of having a little prednisone on board, but he said let's wait and see how she does for now.

I'm glad they decided to wait a little bit, hopefully she can manage to stay off of it.

[Jill D.]

I did ask my neph at my 4-month follow up whether I could ever get off of the prednisone (mostly because of an issue I have with my hip.) He told me that the chance of rejection goes up to 30% without the prednisone. I'm assuming that's based on having a high amount of antibodies. He told me that some patients look at it as "well, that's 70% chance I won't reject." A 5% increased chance is too much even for me to risk it!

[carson]

Unfortunately I have been on prednisone since 1981!!! That's a long time. As it happens, I've developed Addisons disease and can't bee weaned off prednisone. I take only 5 mg/day but my bones are really taking a beating. LUCKILY my eyes haven't started with the cataracts thing yet....yet....