I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on May 12, 2009, 08:25:06 AM
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My neph is starting to talk about a pre-emptive transplant, but steroids are a sticking point for me. I had a very bad experience on prednisone in the past. I'd like to do some early homework to find out which centers don't use steriods. I found a lot of research information through a web search, but not much on specific centers that don't use them.
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:waving; Deanne. Washington Hospital Center does not use prednisone. I belive you can go to the UNOS site and do a search there. There a lots of transplant centers that use induction therapy. Hope you find your answers and I'm sure others will be along to add to this. Good Luck. :cuddle;
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Stanford does steroid free protocol. But it's a case by case basis. Apparently it won't work for everyone.
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Every hospital has their own protocol and it can vary greatly. And it's true, they don't always approve every patient for steroid free transplants, so you need to ask what they would do for you.The 2 Los Angeles hospitals Jenna had been to did not offer steroid free - but the San Diego one did - which was a big relief, and that's who did her transplant. She's been 2 years and 4 months - no problems at all - so far so good!
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You might want to look into open research studies at your center. I'm on Belatacept and Rapamune as part of a study at Emory, I've been very happy with the lack of side effects since I'm not on Prograf, Cellcept or Prednisone.
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Research studies are a great idea -- thanks! Thanks also for the other suggestions!
My neph said steriods are used at the center she'd refer me (Good Samaritan, Portland). She said they taper down to 5 mg pretty quickly, but that they don't take patients off them. I want to look for other options. When I was on prednisone to treat my kidney disease, I had muscle atrophy so badly that within a couple of weeks, it was difficult to get around. It was pretty scary. I'd just bought a multi-level townhouse and I thought I was going to end up in a wheelchair. Then I ended up in the hospital with a blood sugar level of 1500 (I'm not normally diabetic). I know my dose would be much lower after transplant, but if there's a chance of avoiding prednisone altogether, I'll grab at it!
I hope I'm still a couple years away from ESRD and hopefully things will change at my local center between now and then. Otherwise, the implications could be interesting -- would I need to permanently move to be near my center of choice since I'll likely need to go on the list (can't schedule a date in advance with an approved donor)? I don't want to move, but I want to have as healthy a life as I can.
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As stated before, the center may use steroid free protocol, but you may have to go on them if you do not react well to the medications used. Steroids was a major concern for me too when looking for a trnasplant center and at the time, only one of the 5 centers in Chicago offered a steroid free protocol. Now that is diferent here. Some start off with a steroid and scale you down and stop. I was never on any of the steroid suppresants and have been on CellCept and Prograf for over 8 years. At my center, the will use Prograff, CellCept, Rapamune combinations of 2 or just one med, but that depends on each person. The best way to find out is to call the centers and ask or if they have transplant seminars, go to them for more information and questions. American Transplant Association has a list of transplant centers across the US in a book they hand hand out that contains other information pre and post tx.