NPLATE update incase your thinking of trying it!

week one did nothing i was 5 or below
week two same
week 3 went up to 13 on monday down to 8 on wed and back to five on thursday
week four Monday I was at 5 and today 43!!!!!! So excited i really hope it stabilizes
I have had no side effects besides the day i get the shot it makes me extremely tired besides that nothing!
I took nplate after the following didnt work steriods, ivig, rituxin, splenectomy and pretty much eveything

Glad it's working for you! I'll be praying it continues working and no side effects! Happy New Year!

woke up this morning after being at 43 yesterday with petechiae all over my legs n coughin up blood what is going on!!!

Kelirae24, how are you? Wwhat's happening now?! Are you okay?

Kel,
It might take a little while to bring them up and stabalize, if its going to work for you. My son didn't respond to low doses at first, he was up to 5mc's per kilo before he had a decent count. Now he's hovering between 150-250k on 1 mc/kilo! He has even skipped a few weeks and stayed above 130k.

I hope you are getting some response soon, and that you have your bleeding under control soon.

Lucidawn, the same happened to me. I worked my way up to 5mcg/kg and then back down to the lowest dose and even half a dose. Others have had a similar experience. Guy I see at the hospital was at 8mcg/kg and is now, after 15 months, working his way down again. Another woman has had a slow effect but now, after the same 15 months is getting counts of 40 and 50. It seems that this drug changes the body's workings after time so it's not something to be given up after a short time.

thanks for the responses tryin to stay positive drs monday

It does take a while to work. My daughter has been on this drug for 2 1/2 years but went off for about 5 months because she had worked her way up to the max dose of 10 mcg/kg and was only getting counts of 20-35. She tried IVIG, Prednisone, and Rituximab during her 5 month break and nothing seemed to work so they put her back on Nplate at the max dose and her counts SOARED. They were TOO HIGH so they had to keep decreasing and at 6 mcg/kg, it was still ridiculously high so they finally made the decision to drop down to the minimum dose and she gets counts anywhere from 80-250 now at 1 mcg/kg. The hardest thing with ITP is patience. With Rituximab and some of the other drugs, it takes time to work. It is really so important that the symptoms are watched when the counts are low during this time and as long as there is no active bleeding, things should be ok. I hope Nplate does work for you because the lack of side effects on this drug compared to some of the other drug is wonderful! (But then again, it is such a new drug that we really don't know what is happening long-term, but for some of us, that is just the risk we have to take.) Funny, my daugther's doctor asked her earlier this week if she would prefer taking a pill everyday or getting the shot once a week. She immediately replied, getting the shot once a week because it takes just a second to inject and she doesn't have to worry about it again until the next week. Her dr said that the parents have been answering about 50/50 on the pills vs the injection because many of the kids are still deathly afraid of needles.

Drs on monday I was at 24 not bad considerin my usual 5, but over the weekend I had to have dropped to break out in so much petechiae anyone have that happen right after their nplate shot? it seems every shot i get i break out before my counts go up? Again I appreciate all your responses its nice to have fellow itp people to talk to

Kelirae24 wrote: Drs on monday I was at 24 not bad considerin my usual 5, but over the weekend I had to have dropped to break out in so much petechiae anyone have that happen right after their nplate shot? it seems every shot i get i break out before my counts go up? Again I appreciate all your responses its nice to have fellow itp people to talk to

That's normal because it takes 4 or 5 days for the stuff to work so for a few days after you've had the injection you're still going down with the last one wearing off. If that makes sense.

back in the hospital this past weekend at 1k it seems i crash after every shot i get anyone have this happen?

Hi Kelirae24! how are you?hope your platelets are higher now.. Stay positive as you can and don't give up (or maybe you should give up the Nplate)..I think nplate is not helping you at all,maybe you should try another treatment(that's only my opinion)..GOD BLESS!Best wishes and Platelets Up!

after i got out of the hospital on monday i went to my doc wed and i was at 112,000 and today i was ay 161,000 my first normal count in 7 years!! hopeful it continues with nplate!!

Happy for you Kelirae24! Platelets Up!

Back down to two then upto 14 with strept throat n more petechiae then Ive ever seen my guess such a huge drop in two days from 161 to 2 still hopin it works we will see thanks so much for your responses this site is great and i appreciate it so much

I am wondering how you are doing. It sounds like a rough time of it. Hope your platelets and your spirits are up.
Bernadette

Ciao!!! I am in cure whith N-Plate for about seven months and I have my up and down from 14.000 to 350.000.

I was given Retuxin and N PLATE eight weeks ago.
My platalet count wen't to 600. Then wen't down two 500
and one week later it's 728. Now it's 250. What a ride.