N-plate

has anyone been treated with this drug?my dr has been talking about it.I have had to much steroids and gamma gob and a spenectomy....thanks in advance steve.

My son has been treated with all of those that you mentioned,and is currently being treated with nplate and has finally had normal counts for several straight weeks now but it took a while to work up to that and the Dr. agreeing to dose regardless of count even though that is not the protocol because one week when he had a high count (635) he was not dosed by the following week he was at 1 so it was agreed to dose regardless and just lower if needed. It has been a relief lately because most of the winter we went from week to week with IVIG and a count of 2.

I'm using it too. I'm in my tenth month. Doses go from 1 to 10 and I worked up gradually from 1 to 5 and then suddenly had very high counts and came back down to doses 4, 3, 2 and back to 1 where I am now and have been for about 12 weeks now. I have no side effects at all. I self inject each week getting a blood test every 4 weeks. I no longer worry about my count, I no longer check my legs for petechiae as I used to. I feel free from ITP for the first time in 4 years. It's wonderful!

thanks for the replies.i have only had petechiae once and bleeding while brushing teeth.my biggest problem is the emotion downs i get angry ,irritable and manic.i,m very responsive to steroids.i,m coming down now and we will see .

Some haematologists don't like to use Nplate because it's a new drug and the long term side effects aren't yet known. That seems reasonable to me and I tried 6 other drugs first and then felt that I really had no other option. You have to weigh up the pros and cons. Age also is a factor in my thinking. I'm 55 and if a drug were to say give me lymphoma or myelodysplasia twenty years down the line then that isn't such a disaster as it would be if I were now in my 20s.

I'm also very responsive to steroids but I was starting to get tremors which I am sure is due to the continued on and off use of the steroids and I can't live with that so steroids are now only for emergency use for me. If I had such awful emotional side effects as you experience then that too would be reason for me to say "no more".

Everyone's ITP is different and everyone's reaction to drugs is different so everyone's choices will be different. If you have a haematologist who can help you make those choices for yourself then all is good.

I was on it recently and it seemed to work at the beginning, but after a while it stopped working and my white counts and red counts went into overproduction and went really high and my platlelets stayed low, so i am off it now and my white counts have gone back down.

I've had NPlate. 9 shots. It kept my counts up, even as high as 388. I haven't had it in 3 weeks now though cuz I'm also on Rituxan. I think the Rituxan is keeping my counts up. The biggest reaction I had to NPlate was joint pain. Nothing to extreme but sometimes bothersome. With NPlate if you stop taking it your counts will drop quickly. I guess anyway. As you will soon learn....no one acts/reacts the same to any part of ITP!

Just wondering if anyone can advise how quick N-Plate usually takes to begin to raise the counts? I had my first injection last week with a count of 1 and am still only at 2. I am trying to remain optimistic but am worried this may not work for me either. thanks!

Dyan, my husband just got his first shot of Nplate on Friday. His count raised from 4 to 6 but dropped back down to 4 yesterday. Doctor says he wasn't surprised, he thought it would take a little time. When I researched these discussions, I saw where several other people wouldn't get immediate increases (or large increases) until several weeks into treatment. Try not to get discouraged, since they start you out on the lowest dose possible, it's probable that a higher dose will help more. I'm hopeful this will work for all of those that take it.