Getting off cyclosporine

[Hayitsmenadine]

Hello everyone. My name is Nadine and I am 25, about to be 26, years old and was informed by my dr today to stop taking cyclosporine. My counts have risen, especially my platelets and I have been taking cyclosporine since May of 2011. My hemoglobin has not been too responsive but my dr believes it is my PNH that is affecting that count. I asked him if I should taper down my dose and he said I can just stop taking it altogether. I am a little nervous that my counts will drop again.

Is there anyone on here that has been on cyclosporine and is now off it? If so, how did you stop the treatment and were your counts fine afterwards?

Thanks your time.

[Neil Cuadra]

What dose of cyclosporine have you been taking? Stopping a low dose may not be a problem, but most doctors will recommend a slow taper from a larger dose, to reduce the risk of a sudden drop in counts. If you reduce too soon or too much and your counts drop then you may have to go back on a higher cyclosporine dose.

[triumphe64]

Originally Posted by Neil Cuadra

What dose of cyclosporine have you been taking? Stopping a low dose may not be a problem, but most doctors will recommend a slow taper from a larger dose, to reduce the risk of a sudden drop in counts. If you reduce too soon or too much and your counts drop then you may have to go back on a higher cyclosporine dose.

That is my experience. Try to go slowly if your doctor will let you.

[Hayitsmenadine]

I was taking 400mg daily. I've been looking online and I am going to talk with my dr today about it.

[triumphe64]

Originally Posted by Hayitsmenadine

I was taking 400mg daily. I've been looking online and I am going to talk with my dr today about it.

That is a big amount to stop suddenly unless it is toxic to your kidneys or some other way.