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Nplate

Destinys_mommy9788 profile image

Hey yall I have a five year old that was diagnosed last july with itp and they want to try her on nplate has anyone ever heard of this medican?

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Destinys_mommy9788
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rjsmyth profile image
rjsmyth

Most medicines prescribed for ITP are designed to suppress the immune system. Nplate (Romiplostin) is a relatively new approach to the problem of chronic ITP. Romiplostim is in a class of medications called thrombopoietin receptor agonists. It works by causing the cells in the bone marrow to produce more platelets. The basic pricipal is that immune system continues to kill off platelets but there are now so many platelets being produced that some will remain. Nplate is normally an injection once a week given in the stomach. Nplate (Romiplostim) injection controls chronic ITP but does not cure it.

I am very suprised that you have been offered Nplate for your five year old. If you have not already consulted one so I would seek out an ITP specialist.

karinsky profile image
karinsky in reply torjsmyth

I don't understand your sentence: "The basic principle is that immune system continues to kill off platelets but there are now so many platelets being produced that some will remain" What do you mean "but there are now.....

rjsmyth profile image
rjsmyth in reply tokarinsky

Exactly what I said - for example normal platelets are say 400 your immune system kills off 95% your left with a count of 20. Inject Nplate count effectively goes up to 600 your immune system kills off 95% count equals 30.

From Wikipedia:

"Romiplostim's effect is to stimulate the patient's megakaryocytes to produce platelets at a more rapid than normal rate, thus overwhelming the immune system's ability to destroy them. As doing so involves changes to the bone marrow chemistry, a number of potentially serious side-effects may develop, including myalgia, joint and extremity discomfort, insomnia, thrombocytosis, which may lead to potentially fatal clots, and bone marrow fibrosis, the latter which may result in an unsafe decrease in the red blood count."

karinsky profile image
karinsky

I agree with rjsmyth. I, too, am very surprised that they would recommend your five year old go on Nplate I just read a study on Nplate on 66 adults and a high percentage of them developed a form of leukemia. I would NEVER give my child Nplate. By the way, childhood ITP can resolve itself without medication. My hematologist as a child had ITP on two occasions and his only medication was prednisone. Find another hematologist.

Destinys_mommy9788 profile image
Destinys_mommy9788 in reply tokarinsky

She goes to musc childrens hospital but my question is the people that got lukemia did they has mds?

karinsky profile image
karinsky in reply toDestinys_mommy9788

Sorry, I don't know what mds stands for. In America, MDS is a form of a blood cancer. Do you mean medicine?

Destinys_mommy9788 profile image
Destinys_mommy9788 in reply tokarinsky

No i mean the blood cancer that can cause lukemia theyre gonna test her blood count weekely to make sure she dont drop there

rjsmyth profile image
rjsmyth in reply tokarinsky

Be careful here - I have been on Nplate for two years and have never read any studies that say Nplate can cause leukemia in ITP patients and trust me I have read them all. There is however another condition called MDS that Nplate is wholly unsuitable for:

"Nplate is not for use in people with a precancerous condition called myelodysplastic syndromes (MDS) or for any condition other than chronic (lasting a long time) immune thrombocytopenia (ITP). If you have MDS and receive Nplate®, your MDS condition may worsen and become an acute leukemia. If MDS worsens to become acute leukemia you may die sooner from the acute leukemia."

Destinys_mommy9788 profile image
Destinys_mommy9788 in reply torjsmyth

Rjsmyth this is what i am talking about her docyor said that if she doesnt have mds problems she should be fine on it u said u been on it for two years is it helping u

rjsmyth profile image
rjsmyth in reply toDestinys_mommy9788

It is helping but I should explain that I am 60 yrs old and have chronic refractory ITP Lately it has become less effective and I am taking more of it with subsequent side effects. I have hit the buffers as far as treating my ITP is concerned. I failed every treatment/medication available for ITP. I have one "rescue" remedy which is IVIG - this will raise my count but only for a fortnight. For me it is take Nplate or consider having my spleen removed something I am trying to avoid.

You need the second opinion - Nplate for a five year old who is still within the time limit to be catagorised as Acute rather than Chronic ITP seems a very odd choice. Her ITP could still go into complete remission which is common in children but very rare at my age.

karinsky profile image
karinsky in reply toDestinys_mommy9788

First of all, you rarely see the condition called MDS in children. It is an affliction of older people.

rjsmyth profile image
rjsmyth

Further reading:

nplatehcp.com/nplate/about-...

iccle profile image
iccle

I have a 5 yr old with chronic Itp, this past year and half, and I certainelty wouldn't dream of starting him on nplate, and it hasn't been recommend to start either, his count is between 3-14, with no bleeds thank god, haven't had any treatment in 8 mths just regular blood checks.

Destinys_mommy9788 profile image
Destinys_mommy9788

My daughter has the same thing with no bleeding and she has been averaging 10-0 but she gets ivig twice a week every two weeks but they want to try something else to help

iccle profile image
iccle in reply toDestinys_mommy9788

Why are they giving her ivig, when there is no bleeding, they say to treat the bleed not the illness, just curious

janran profile image
janran

Hi I am an adult with chronic ITP and was offered the chance to try Nplate as steroids were making me feel so ill. I decided not to go down that route as one of the side effects mentioned was that after having Nplate your body might lose the ability to produce platelets without the Nplate (although in theory this should only last for two weeks). I decided to leave it as an option to try later and am taking MMF (mycophenolate mofetil) at the moment and my counts are creeping up. For this reason, I would be even more concerned about giving Nplate to a child as they often go on to recover completely without treatment. I would agree with the others on here and try and get a second opinion. Hope everything goes well for your little girl.

Regards Janet

Destinys_mommy9788 profile image
Destinys_mommy9788 in reply tojanran

Thank u very much and i have desided the same i am goibg to wait

stephie4 profile image
stephie4

Hi I have just done my first wk on steroids (45mg) it is making me feel so ill headaches, nausea, bloated and more any ideas what I can do to help? :-((

Destinys_mommy9788 profile image
Destinys_mommy9788 in reply tostephie4

They had my daughter on predison in early sept and they also put her zantac to help with the side effects can try it it worked for her at least

gordontardio profile image
gordontardio in reply tostephie4

Just a note on countering successfully the side effects of pred. I am on a fairly low dose now at 12.5 mg. But it has been higher. I also take 100mg Aza. which does not seem to help the itp, but whose side effects are opp. of pred. I also follow traditional chinese medicine (tcm) and this helps tremendously. No more hypertension, and I sleep well at night.

HappyHopeful profile image
HappyHopeful in reply togordontardio

What type of Chinese herbs have you been using? Would love to try that in conjunction with Nplate which we will begin next week.

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