Once you start Nplate, you can never go off.....

I understand that once you start Nplate, you can never go off because the studies have shown that when patients discontinued treatment, their platelets dropped even lower than pre-treatment levels.

My doctor has been trying to get me to try Nplate for a couple of years now, as I have not had a permanent response to any of the other treatments. I had severe side effects with Win-rho and gamma guard, and the results from rituxxin were short lived. Prednisone works well but it has started to cause heart problems...arrhythmia. I am 83 yrs old so I don't feel like I can undergo the surgery to have a splenectomy.

I'm afraid if I go on the Nplate and have severe side effects, I won't be able to go off it without winding up in an even worse condition than when I started. (By side effects, I mean: arrhythmia has been known to occur in some elderly patients and bone marrow cancers are also a risk).

The doctors seem to be concerned only with my platelets, not my entire medical condition. They are working with the newest, cutting-edge/experimental medicines so they are always eager to get new patients into the studies.

How low do your platelets have to go before you are in real danger?
I would be interested in hearing how others have responded to Nplate. Has anyone experienced heart arrhythmia or other severe side effects? Has anyone gone off Nplate and been successful in keeping their platelets up? If it becomes necessary to stop Nplate after starting it, what recourse is left?

Not everyone's count falls when they stop Nplate but it's possible, and it tends to last about two weeks before getting back to normal. It doesn't sound much different from the normal ups and downs of ITP to me.

I have had no side effects from Nplate and have become more sensitive to it as time has gone on so that I can now take a tiny amount and get a good effect. I had horrible side effects with prednisone including a very fast heart beat at times, but I haven't had anything like that with Nplate. Some people have gone into remission with it and been able to stop so it isn't sure that it's a for ever drug.

Also it is not supposed to cause bone cancers but can cause fibrosis of the marrow which is reversible when you stop the drug, and they can tell by blood tests whether that is happening or not. It's rare at current doses.

What is your count now?

Never is a very long time and I wouldn't think a person would be stuck on N-Plate forever. There have been people here who quit using it and moved on to something else.