Getting off NPlate

One of the side effects noted for Nplate is that you can get "worsening" counts when you stop. Based on how the drug works, I can see how that might be the case, assuming your body has ramped up its efforts to fight all those new platelets, and then suddenly there aren't as many to fight. Seems like the platelets would probably take a hit, at least temporarily.

I can't find much specific medical research on this online. So, I'm curious about anyone's experience getting off of Nplate and what the effects have been.

Why did you stop?
How did you stop (taper, cold turkey)?
What happened to your counts, and were they worse than before Nplate?
Did getting off Nplate contribute to worse problems with symptoms/bleeding?

After having some success with relatively high doses of Nplate, I am considering another therapy that might have longer lasting effects. I was below 10k before Nplate and was able to get up into the 20-60k range for the last few weeks. Docs want to use the opportunity to take out my spleen, but I'm not convinced the splenectomy is the way to go right now.

Haven't had any success with other traditional therapies, so I'm hoping that I can use Nplate again in the future if necessary to get counts up. But I'm not sure how much experience there is out there with getting on and off Nplate.

Thanks, Will

My daughter is only 12, but she has gone off and gotten back on Nplate. She was on the maximum dose and her counts were hovering in the 20s so they decided to do a bone marrow aspiration and found increased reticulin in her bone marrow. Due to this, we took her off the drug and she was put on Prednisone and given IVIG. This seemed to decrease her bleeding symptoms, but it did not help with keeping her count up. She quickly dropped down to 10 and stayed there for several months while we tried other treatments, which were not successful. Decided Nplate was the best treatment for her and her doctor agreed that her body had enough time to get rid of the reticulin so we started her back on and have had high counts or normal counts since. And she's on the minimum dose this time around, which is nice because there is so little of the drug really going through her body to give it a little boost.

It takes about 2 weeks of really low counts and symptoms and then the body is supposed to "normalize" itself to where it should be where it was before. If you were a bleeder before, you may continue to be a bleeder, but if you don't do anything for those two weeks after stopping, the bleeding might be even worse. I would at least suggest other treatments for two weeks to a month after stopping and then see what you need to do from there. We believe that Rituximab is the reason for Nplate working this time around. We've heard of other cases being the same, but it doesn't always work for everyone. Good luck in your decision!!!