Tacrolimus for Nephrotic Syndrome User Reviews
Brand names: Prograf, Envarsus XR, Astagraf XL
- Nep...
- Taken for 5 to 10 years
- April 20, 2018
"My son has been on tacrolimus for 5 years. He is 14 and has Nephrotic syndrome, never had a transplant, and his urine always shows that he has protein leaking when results come back. When the doctor sees him, he looks fine, but when the labs come back, they're not good. I read all the reviews, and it looks like you all had transplants and it helps. I can't understand why this isn't working for him. The pills get bigger and smaller, and it's the same tacrolimus? Can anyone tell me if it's the size of the pills?"
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"I am now 57 years old and I had a kidney transplant 5 months ago, and am now on tacrolimus. However, the question is about nephrotic syndrome, which I previously had from the age of 18 months. I was mainly treated with varying doses of the steroid prednisolone for circa 50 years. However, in the '80s, I received cyclosporin, another powerful anti-rejection drug, which seems to be used less often today, in favor of tacro. Unfortunately, a side effect of years of taking cyclosporin was that it increased my creatinine levels (damaging the kidney), and when levels rose to around 150, they stopped it and resumed steroids, then at a much lower dose (5 mg instead of 20 daily). The point is that 'for me' it was a tricky decision of how long to stay on the cyclosporin and the damage it causes to creatinine levels against increased amounts of steroid. Eventually, almost 30 years later, further damage made it inevitable that I needed a transplant, that was received from my stepdad. I'm in the UK, so our great NHS covered my costs."