I am kidney post transplant patient before 18 month ago. my post transplant care is without prednisolone. Now i am taking pangraf (Tacrolimus) 1mg morning and 0.5 mg evening, Cellcept 500mg BD. i am doing well. I meet here in Nepal many friends are using prednisolone with a lot of side effects.Many doctors I visit after my kidney transplant here in Nepal are saying without predisolone is more risky for rejection of new kidney. But my transplant doctors team (India) already done more than 130 steroid free transplant and all of them are doing well. Any friends here without steroid free transplant to share experience with me ? or knowing about steroid free transplant?
I did take a steroid (Medrol) at first for about a year or so after my multivisceral transplant, but now I am no longer on it, and only take Prograf for immunosuppression. I have been fortunate in that I have not had any major rejection episodes since my transplant which occurred almost three years ago. I am glad to hear that many have done well without steroids. Hopefully what your transplant team in India is learning will be able to help others.
I am a double lung recipient. My transplant was done at Cedars Sinai in Beverly Hills,Ca. My doctor said two of the med's i will most likely be on for the rest of my life will be Prednisone and bactrim. That is until they come out with that one magical pill that will take care of any rejection issues! That last part is my idea. :)
Mary about a year and half ago my kidneys started acting up so my doc lowered my prograf and added rapamune. My kidney numbers improved right away. I have been on a low dose of prograf 0.5 mg twice per day and 2mg of Rapamune ever since and so far so good. My doctor has talked to me about stopping the prograf all together.
Is Rapamune = Sirolimus?
I had been prescribed Sirolimus 2 months ago as my transplanted kidney was not going as well as it should have. However, I have had severe side effects such as diarrhea, shortness of breath, chest pains, nose bleeding and a very very bad cough. I just want to know if you experienced any of this and how long did it last? I have been admitted in hospital now for 2 weeks and my doctor says I have to be monitored carefully so I'll have to be here for another 10 days at least. I'm so worried and frustrated. Your reply will be much appreciated.
I am 23 years post Cardiac Transplant and I have been told that I will never be able to stop taking the prednisolone. I have however been able to get it lowered from 10mg daily to 5mg alternate days - helping me to lose weight rather rapidly.
if you can do it without steroids more power to you. i have had alot of steroids since my transplant and it has destroyed my body. i have had both hips replaced, one shoulder and soon to be number two. for me pred has been by far the worst part of my transplant.
While I'm only 2 years out, I do know that my transplant doctor does not believe in steroid-free for heart transplants. I tend to trust him because he has some of the highest survival rates in the country for heart transplants. That said, I'm only on 5 mg of prednisone once a day and I've not had much in the way of side effects. I've been lucky. I will say this though, and it was some of the best advice I got after my transplant - Don't ever hang the success of your transplant on your med list or doses. You will drive yourself crazy.
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"Mike, hope all goes well next week. You will be surprised at how different the evaluation process is now. Quite a bit easier and not nearly as evasive as before. I wish you well. If you want to talk more just let me know."
"Hi Beverley. I hope youre felling well. I live in eureka mo. I had my heart transplant at stl univ in 1984. I now see Dr Ewald at Barns. Im Going in Next week to be evaluated for a second transplant!"