Protein in Urine

[peregrin]

I received my transplant a little over three years ago, and am taking everolimus (a variant of sirolimus), prednisone and mycophenolic acid (myfortic).

Recently my labs showed proteinuria (protein in the urine). I understand that this can indicate the beginning of organ failure.

My nephrologist is suggesting I switch from the everolimus--known for causing proteinuria--to cyclosporine or belatacept.

I'm concerned about the cyclosporine. It can cause hypertension, tremors and headaches. (I had the latter two when I was taking tacrolimus). It can also interact with diuretics (which I take to control bloating). And is not recommended to be take with the myfortic (which I am taking).

Belatacept also has side effects, though they seem less likely. However, it must be taken by infusion; initially, every two weeks, then every four. I don't really want that limitation on my life style.

The long term survival rate with belatacept is better than with cyclosporine.

Any thoughts would be greatly appreciated.

[WYOAnne NKF Ambassador]

I am 23 years post transplant and have been taking Myfortic (Mycophenolic acid) and cyclosporine. For me it has worked and kept my creatinine at 0.9 - 1.0. We all have some protein in our urine. The last time I had <5 MG/DL or protein in my urine.

You need to trust your nephrologist - trust that his experience is what is trying to keep your transplant healthy.

Remember that we are all different. What does not give me any side effects may not be the same for you.

[peregrin]

I wasn't looking for advice, just others' thoughts and experiences. I would suggest to you that blindly following your doctors' advice is a recipe for disaster.

[BlurpleIsBest]

I switched from Tacrolimus to Belatacept in fall of 2016 and have had a much(!) better experience. For me Tacrolimus was both nephrotoxic and neurotoxic (multiple symptoms for each) and I have minimal side effects with Belatacept so going in for the every-four-week infusion is worth is to me. My Belatacept side effects include fatigue, fuzzy-headedness, and slight headache for 1-1.5 days after the infusion and then no side effects. Another benefit to switching from Tacrolimus to Belatacept is my creatinine decreased from 1.5-ish to 0.9-1.1. This means a lot to me because I lost my first (living related donated) kidney from Tacrolimus nephrotoxicity (it lasted 15 years). The transition period of more frequent infusions when starting Belatacept was not a big deal for me.

I'll also share that I switched from Myfortic to sirolimus because my transplant nephrologist believed the Myfortic was the cause of a 1.5-year bout of ulcerative colitis. The colitis resolved a few months after stopping Myfortic. I mention this only because you were talking about these two medications.

Good luck!

[Denise-80]

Hi Peregrin - Did you switch to Bela or cyclosporine? I take Bela, sirolimus, and pred. For me, Bela is great and the monthly infusions are not that big of deal. I thought it would be but I’m usually in and out in less than one hour. I’m having some unwanted side affects that are related to sirolimus though, including high cholesterol and mouth sores.

Best wishes, D

[peregrin in reply to Denise-80]

Neither. My doctor put me on a low dose of Losartan. That's reduced the amount of protein in my urine. I am hopeful the trend will continue.

[Denise-80]

that’s awesome!

[peregrin in reply to Denise-80]

Time will tell