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back to single digits: Nplate today 8 years 3 months ago #43490

  • firkins
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Hi All -- wondering if anyone else has done NPlate with their child? Our 15 yo has tried just about everything -- bad reactions to ivig and anti D -- hates the dreaded prednisone (who doesn't?). She did get two good runs from Rituxan -- 8 months and then 10 months. But she is back now in single digits at 8, with big bruises, lots of pettichae, and some small blisters in her mouth (the one thing that really gets me...)

With some trepidation, we'll do one more round of Rituxan in November. My daughter wants to "time" it so she can hopefully get an ITP free summer to travel out of the country -- In the meantime, our doctor is insisting on either prednisone (the worst) or NPlate. So we are off to the hospital today for the first shot of Nplate.

My heart is of course is my throat. I hate hate hate pouring these drugs into my daughter's body. Our doctor wants us to do a splenectomy but our daughter is just not there yet, and at 15 must of course be fully on board. I'm not sure I am either but god I hate these drugs.

ANY EXPERIENCE WITH NPLATE FOR YOUR CHILD??? thanks all.
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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back to single digits: Nplate today 8 years 3 months ago #43492

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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I was 17 when first diagnosed, now I'm 28. And trust me I know what you and your daughter are going through I had petechiae everywhere I missed a lot of my senior events in high school but there are worse things. I had a splenectomy two months after diagnosis and I regret it since it didn't work. Eleven years later every treatment you can think of with no treatment my count is 1-5 so no treatment isn't an option for me. I am normally on nplate and my counts hang out 25-55 and that is just fine with me, unless I get sick then my counts go down. Itp is a pain in the butt but very treatable I am actually having my first baby now I am six months pregnant and having to have weekly ivig it's time consuming but I really wanted a child of my own dispite itp. I hope your daughter gets some remission so she can do all the traveling she wants to do. When I was diagnosed my mom was and still
Is the same way with all the drugs as you are she hated it and felt bad all the time, just remember there are worse things to have and she will be ok, it may be with the stupid drugs but she will be ok. At times the drugs seen worse then itp itself but sometimes there necessary :)
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back to single digits: Nplate today 8 years 3 months ago #43496

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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A few children have done N-Plate and have done fine. There was a child here a while ago, Caitlin, who was your daughters age. She did N-Plate for quite some time and it was a perfect treatment for her as it allowed her to return to a normal life. Her Mom hasn't posted here in a while though.
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back to single digits: Nplate today 8 years 3 months ago #43497

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Here is an old post from her:


I don't self-inject...I give my daughter the injections. Mixing the drug is actually the easy part. I've been giving my daughter the injections for almost 4 years now and I promise...it is not hard once you've done it a few times. I really want my daughter to start giving herself the shots. She is 14, almost 15. She knows how to mix everything together, but is too afraid to give herself the shot. We did the first 18 months at the hospital and then when it was time for us to start self-injection, the nurse watched me mix it and had me do it in front of her and we also had a dvd that showed us the steps in case we forgot. You will really the convenience of doing it at home. We actually have to go back again this afternoon after going last week because her count was higher than the protocol wants. If it is over 200 again today, they will lower her dose and we have to go back again next week. Really hoping her count is under 200 so we can get the drug to do at home the next two weeks before going back again. (We have to go every 4 weeks and if her count is good, we get to take 4 vials of the drug home + the other stuff...we go every 4 weeks no matter what so I make sure I plan our vacations around the times we have to go to the hospital.)
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back to single digits: Nplate today 8 years 3 months ago #43498

  • firkins
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Sandi and Kelirae,

Thanks so much for your posts -- really reassuring today for me to read and also to share with my daughter so I'm really grateful. We are in the ER right now -- just got her first shot of NPlate and so far so good -- CBC came back at 2, so it's good we are doing something!!

Kelirae -- wish you the best of luck with your pregnancy! Very exciting. Mia was really interested to read your post. She writes with a girl in England with ITP, which has been fabulous. Since she doesn't look sick it's hard for her friends to get it and she just doesn't feel it's something she can talk about with otherwise.

Anyway, feeling grateful for this site and for all those on it.

Blessings. Firkins
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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back to single digits: Nplate today 8 years 3 months ago #43502

  • Lori1220
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Hi. My daughter is 16. She just started on Nplate this past June. She is actually part of a study. She is into her 4th year post diagnosis. Prior to Nplate, ivig was the only think that worked for her....but, it is so short lived. Her counts usually run 3-7K with no treatment. So far with Nplate, she has been above 30K. No ivig since march which is great for her as she does not tolerate it well. Best wishes to your daughter. Hoping for safe counts for her on NPlate.

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back to single digits: Nplate today 8 years 2 months ago #43522

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
  • Posts: 313
  • Thank you received: 38
Also don't get discouraged if the shot doesn't work right away when I first started nplate it took about three weeks

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back to single digits: Nplate today 8 years 2 months ago #43525

  • AmberLynn
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I tried Nplate after nothing worked for me, and it did work. However, after a couple of months it affected my migraines so severely that I had to taken off of it. I went back to ivig and it started working again and now my counts run high (for me, I usually ran single digits) Just don't give up.
“Life is a theatre set in which there are but few practicable entrances.”
― Victor Hugo, Les Misérables
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back to single digits: Nplate today 8 years 2 months ago #43530

  • firkins
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  • Posts: 139
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Hi all, So grateful for the posts about N'Plate. Mia had the injection two days ago and so far so good. It was very easy -- no reactions at all -- and so grateful for a drug that isn't given with the dreaded prednisone.

We go in again next week for the second injection and then, depending on how it goes, a good friend who's a nurse can give the shots at home.

thanks for the support everyone -- and hoping you all have high platelets!
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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