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Angelina and nplate

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15 years 2 months ago #6219 by dondude
Angelina and nplate was created by dondude
This thusday will be her 5th nplate dose. Got count from blood test yesterday still at 5000. Doctor says we can continue nplate for one month more. I'll ask what dosage she is at on thurday. On vacation this week so giving my wife a week off of going to doctor and hospital for treatment and blood tests. She will be 5 in december and was diagnosed in oct 09.

Father of Angelina age 4 diagnosed Oct. 09
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15 years 2 months ago #6221 by lucidawn
Replied by lucidawn on topic Re:Angelina and nplate
Our hemonc says it either works or it doesn't. Sorry it isn't working at this point. What dose are you on?

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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15 years 2 months ago #6226 by tacmom
Replied by tacmom on topic Re:Angelina and nplate
They usually go up one mcg each time the count is under 50 so i am assuming she will be on 5 mcg/kg this week. Did your daughter have alot of bleeding symptoms before starting Nplate? If she did, how are her symptoms now even with her count being at 5? If Nplate makes the bleeding symptoms go away, sometimes that alone will show that it is working. Im sorry her count isnt any higher. One thing we ve noticed in the short years that nplate has been around, is that sometimes taking a break, skipping an injection for a few weeks, then going back on seems to jump start things. Im not a dr, but this is a pattern that has been seen with some patients. My daughter was on it for 2 years and got up to the maximum dose and her count was below 50 (she did well on it though with most counts being above 50). She just went back on in May and has had her highest counts ever. She had never gone into the normal range and now we struggle with keeping them in the normal range. (Shes above the normal range.). Shes currently on 8 mcg/kg and we re trying to get her to go down to 5 mcg/kg next week.

Has your daughter tried anything else? She still has a chance of being an acute case since she hasnt had this a year yet and she is so young.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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15 years 2 months ago #6255 by dondude
Replied by dondude on topic Re:Angelina and nplate
Just got back from doctor's office. Dose is .8 mcg. She has no bleeding at all, just bruises easy. We started with IVIG then went to prednisone, winrho,rituxan, about every treatment so far besides chemotherapy. Next week they will give her 10 mcg. that is the max dose. She can have six more treatments after today.

Father of Angelina age 4 diagnosed Oct. 09
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15 years 2 months ago #6257 by tacmom
Replied by tacmom on topic Re:Angelina and nplate
Caitlin spent most of her first year on the "watch and wait". She had alot of petechaie and bruising and bloody noses but we didn't worry unless they didn't stop within 15 minutes. (Her counts were almost always under 20.) We finally turned to treatment after she had an injury and it really scared me so we started trying different treatments. Nothing worked for Caitlin (IVIG, Rituxan, prednisone-unless it was a very high dose), but I'm thankful Nplate works for her. When I was mentioning that sometimes it is good to take a break, sometimes it really is, if there isn't alot of bleeding symptoms.

Nplate has been a blessing for Caitlin, but it also comes with a price...she did develop bone marrow reticulin that they get so worried about. She developed it after being on the maximum dose for a few months. The good news is that it does go away once you take them off. Caitlin was off the drug for about 5 months before she went back on. She is on week 12 of Phase 4 (she's on a trial) and her counts are still in the 500s. She will have another bone marrow aspiration/biopsy in the next few months to make sure the reticulin grade (grades are 0-4 and Caitlin was a 1-2) hasn't gone any higher.

I truly hope the Nplate kicks in, but it sounds like it isn't doing anything unless she was having alot of symptoms before and all she has now is bruising. (Are they darker bruises than they were before? I've seen that on two of the other kids that come to the clinic that are on this drug.) It's just unfortunate that a 4 year-old has to endure that many treatments in a short period of time so I hope things turn around quickly for her!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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15 years 2 months ago #6278 by hunter1010
Replied by hunter1010 on topic Re:Angelina and nplate
how do they give n plates and what r the side effects
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15 years 2 months ago #6284 by lucidawn
Replied by lucidawn on topic Re:Angelina and nplate
Nplate is a weekly injection, sub q, and the side effects are pretty minimal. Some people get some nausea from it sometimes. But it seems pretty minimal.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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