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TOPIC: nPlate, treatment or just avoidance of symptoms?

nPlate, treatment or just avoidance of symptoms? 4 months 2 weeks ago #67484

  • Toby-Wan-Kenoby
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Hi all, before posting I tried to search but came up blank, appologies if I failed as a search master.
My hematologist is considering to try nPlate after 3 courses of pulse treatment of Dex 40mcg for 4 days only temporarely raised my levels from 3k to around 50k and back down.
My question is: Is nPlate actually helpful for actively helping the body heal itself or is it just to get the platelet count up to alleviate symptoms?
If it is just to get the count up I am contemplating not trying it for a while and seeing if anything changes on its own. But I am not clear on this point. Any help appreciated.
Tobias
Diagnosed 7/2019 let the fun begin...

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nPlate, treatment or just avoidance of symptoms? 4 months 2 weeks ago #67494

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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NPlate is not a cure. It mimics thrombopoietin (TPO), which is a key component in platelet production. It's only meant to boost the numbers.

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nPlate, treatment or just avoidance of symptoms? 4 months 2 weeks ago #67496

  • Lman
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  • We cannot change the cards we are dealt, just how we play the hand.
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Tobias, Nplate just forces your body to make more platelets so your count won't drop to dangerous levels. Some patients recover after being on some form of maintenance therapy, like Nplate. Up to two-thirds of patients may recover doing so (although, it may take years, but general consensus is that 2 years or 4 years are some good benchmarks, although it can last much more)
It's a nice drug with little side effects! The idea that you want to wait and see if you need treatment for your itp, is a nice one, indeed. Because the best treatment is no treatment (if possible). Also, make sure to check your counts regularly while receiving no treatment.

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nPlate, treatment or just avoidance of symptoms? 4 months 2 weeks ago #67509

  • Toby-Wan-Kenoby
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Thanks for your answers Lman and midwest. My hematologist said the manufacturer is making it sound like that nPlate is also helping the body to reset the immune system but there is no strong evidence to this effect. In the absence of the contrary it is most likely just getting the plate count up i an ideal scenario.
Over the weekend I am going to experiment with Papaya Leave Extract. As my count is stable at 3 giga/l it is ideal to experiment and see a change or not. It would be much harder if my level were bouncing around.
Diagnosed 7/2019 let the fun begin...

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nPlate, treatment or just avoidance of symptoms? 4 months 2 weeks ago #67518

  • jayinchicago
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Hello Toby,

NPlate works for some people and does not work for some.

Luckily it worked for me-

I did not take NPlate every week, initial dosage was to take NPlate only when the weekly platlet count was less than 50k. Then it was reduced to 40k. Finally reduced to 30k.
My platelets stabilized around to 50k without needing any NPlate and it has been holding for the last 18months.

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nPlate, treatment or just avoidance of symptoms? 4 months 2 weeks ago #67536

  • Hal9000
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Tobias, many folks have gone into remission by taking Promacta or Nplate alone here on this forum. There is lots of positive evidence. Here is a thread listing those members.
'No Response to IVIG, ACK !'
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

But, as I understand it, remission is not because of the drugs themselves. It is because of an increased number of platelets. Let me explain.

It is believed that viruses, hitching a ride on platelets to distribute themselves, is what causes the immune system to destroy platelets and the virus. Then in the case of ITP, just platelets alone.
"Platelets and Infection – An Emerging Role of Platelets in Viral Infection"
www.ncbi.nlm.nih.gov/pmc/articles/PMC4270245/
One's body can rid itself of Flu viruses, but it cannot rid itself of the various Herpes viruses. IMHO, the former is responsible for many TPO-RA drug remissions and the later is responsible for the chronic form of ITP.

To me, it is that the immune system consuming a large number of normal and Flu virus free platelets for awhile (months/years) causes remissions while being treated with TPO-RA drugs. Published ITP studies say that the TPO-RA drugs cause the Breg cells of the immune system to go into a 'balanced' condition - which then ends the targeting of platelets. The antibodies continue to exist, but they are not called on to destroy platelets.

That said, even if you don't achieve remission, the odds of having an intra-cerebral hemorrhage (ICH) are drastically reduced when counts are increased - which is the main goal of TPO-RA drugs.

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nPlate, treatment or just avoidance of symptoms? 4 months 1 week ago #67546

  • Toby-Wan-Kenoby
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Hal, that is super interesting stuff. The "Platelets and Infections" article is a little over my head but I will research more and read more of the references quoted.
On a different subject. I found your classification in the 4 different cases very interesting. Is there a way to find out in what group I would be? Or is it derived from the response to the different drugs?
Diagnosed 7/2019 let the fun begin...

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nPlate, treatment or just avoidance of symptoms? 4 months 1 week ago #67561

  • Hal9000
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Yes, it depends on treatment responses. How you respond to IVIG, or, how you respond to Promacta/Nplate will dictate the row. No useful steroid response eliminates row 1. User 'gspaniol' appeared to be row 4. His subsequent remission is encouraging.

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