Nplate dosing

Has anyone had nplate dosing based on their personal history or circumstances? Does any physician go outside the recommended dosing of the company?

How would you want to go outside the recommended dosing? I tend to use less rather than more with a target count of 30 to 50 rather than above 50. Is that what you mean?

I get my shot from the nurse at the hospital. They figure the dose according to your weight then adjust it accordingly depending on your platelet level.

Amgen has a strict protocol that is supposed to be followed and this is the reason for the Nexus program.

My daughter was on a Phase 1 and 2 trial for 2 years and just started back up again today for Phase 3. It started back in January, but we decided to take her off and try some other treatments. Nothing else worked so we are back and Caitlin had her first injection this morning (400 mcg) so we will see where she is next week. My hope is that she will be "too high" so that they can drop down her dosage a bit since this is the maximum dose based on her weight.

I have read and studied the amgen guidelines I also know those are based on clinical trial for certain individuals. When someone is at 635 one week and does not receive the dosage they have been receiving then are at 1 the next week there should be exeptions made based on the individuals history to try to avoid a crash such as this if at all possible. Since one of the side effects is worsening of platelet counts when Nplate is stopped that maybe could be avoided if the drug is kept circulating in the system. One Dr. who was one of the originals to use this with his practice agreed with that and dosed at a higher platelet count. We have to deal with another Dr. closer to home and I was afraid he would not agree but, after our appointment he did agree that even if a higher platelet count was acheived to still give nplate but at a lower dose since we had recently had success with nplate.

Okay yes, I think this is the sort of thing that they will learn as they go along. I have done similar but the other way around in that I now won't go up a dose as quickly as I should. As you know under 50 you should higher the dose but experience has shown that I respond to it so well that I can go far too high. I had a count of 48 so we upped the dose and I then had a count of 335 so we lowered the dose again and have set the bar at 30 and will only take a higher dose under that.

I was just thinking this morning about whether they would do half doses. I have been up to 5mcg/kg and now gradually come back down to 1mcg/kg and I seem to respond to it far more now than I did at the start so even 2mcg/kg now has me go way too high. I wonder if I drop below 30 again we could go to 1.5mcg/kg. I doubt it as I'm still officially on a trial but it would make sense. Last week I had a count of 112 on the lowest dose.

I'd say that this drug isn't necessarily the answer for anyone who wants an easy life with ITP. For me anyway it's an up and down game and I don't seem to be able to get stable on it at all. But no side effects means it's worth it for me.

I totally agree with you sounds like we are on the same page with our dosing methods.The drug isn't the answer for everyone we even got discouraged with it and even stopped it in the fall and things seemed to get worse after that he went from week to week in the single digits even with IVIG. We then decided to start it again mid Dec. and we have had success with it other then the drop out last week which I feel was contributed to the no dosing the week before when he was 635. This drug does seem to be a good option compared to all that have been offered in the past the sad thing is I have talked with some other with ITP and their Dr's have never mentioned nplate to them.