NPlate Shot 4 not working well - experiences?

I just did my 4th shot and taking 60mg Prednisone a day. Platelets are lower 20s (normal for me really even on Promacta for 2 years I rarely was about 35). Any of you take a while for the NPlate to kick in? After 2nd shot my platelets dropped to 3. They said they would keep me on the Prednisone until they see platelets rise then taper me down. What if 20s-30s on NPlate is as good as it gets (which works for me since its all I ever had). I received my shot yesterday and today I have a few blood blisters and was feeling for the first time just a little dizzy nothing horrible and my face is flushed. I realize dizzy and flush faced can be a side effect of Nplate. Maybe that is a sign that it is starting to work. Grasping at straws here I think. Nurse said she thought I should have seen signs that it was working by now but I am not sure. Just wondering about others experiences and thanks!

Nplate takes four or five days to start working after the injection so you shouldn't notice any change in counts after just one day. Side effects however are different, you can get those almost immediately.

Have you seen any rise in counts at all while on Nplate? Mine went up and down for a while until I got on a higher dose. I hope your doctor is highering the dose each week when your count is low.

Yes they are certainly adjusting. I am not concerned about being in the 20s my norm is 20s-30s (even on 75mg promacta a day for 2 years remained in that range). The 4th day after my 3rd shot my platelets dropped to 3. Not sure I would count my platelets up and down between 3 and 33 but I guess you could. If it takes more than 4 shots I am game was hoping this was not that unusual. Thanks Ann for your reply Friday, 5th shot and Dr visit regarding the treatment hoping they are sky high and I can taper off the 60mg Prednisone. Are you still on NPlate and if so how long have you been?

My count started going high after three years or so, so I stopped it and kept normal counts for almost a year. Now seems to be slowly coming down, last count 87 but we shall see.

Curley - what is 'sky high' to you?

Over 70 I guess. In 2009 I was on the study for Eltromopag (Promacta) and it shot to over 400 first time in my life but right back down and nothing that high since. I was diagnosed in the 1960s.

It took me 7 months to get stable on Nplate. Patience is needed.

Great that is all I really wanted to hear. Thanks so much Ann!

Been on Nplate for about 2 months now. Weekly injections. First week went to 100k. Then back down and have been between 25k and 54k.

I'm curious about NPlate dosing, looking into it as something to try next. I've been getting morning headaches with Promacta.

Patty, when you were at 100K did your doctor reduce the dosage to bring you down 25-54K? Do you mind if ask what dose are you on now? thanks

Ann-- what was your high count when you and your doctor decided to stop dosing? It says in the instructions to stop dosing at 400K but that seems dangerously high to me. I'm more nervous about high counts with TPOs than low counts. another question: For instance, if you were at 100K would your doctor reduce the dosage or give you the same dosage again? Any tips on how to stabilize the counts on NPlate?

Thanks! and good luck Curley!

The guidelines for Nplate are different in the UK and we are not to use it with a count of 250. And to reduce the dose with a count over 150 two weeks running.

My haematologist had told me to use it less frequently, every two weeks and then every three weeks but I wasn't really happy doing that without getting regular blood tests so when I got a count over 150 and I was already on the lowest dose possible because I'd already reduced and reduced, I stopped using it. I self injected so basically did my own thing for a long time before that.

I eventually told my haematologist who I only see every six months, that I'd stopped using it and he was fine with it and just said go to the Day Unit for a blood test if I think I've crashed again. My count is now fairly low, I know that because of the purple bruises appearing. I'll get a count done at my next appointment with him next month.