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TEENS with ITP
General Discussion for TEENS
Recently Diagnosed, Need Others To Talk To
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TOPIC: Recently Diagnosed, Need Others To Talk To

Recently Diagnosed, Need Others To Talk To 2 years 3 months ago #63175

  • Abi2000
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Hi, my name is Abi. I was diagnosed with epilepsy five years ago now, and only a couple of weeks ago I was just diagnosed with ITP. Though I have a pretty great support system here at home, I don't really know other people with invisible and/or chronic illnesses, so it feels very alone. If anyone in the forum is still active, I'd love to hear from you! It makes it easier to know other people are feeling the same things.

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Recently Diagnosed, Need Others To Talk To 2 years 3 months ago #63178

  • 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
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2350
How old are you, Abi? There are not many teens that come here, but you are welcome to join the adults.

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Recently Diagnosed, Need Others To Talk To 2 years 3 months ago #63192

  • Abi2000
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I'm eighteen actually, so I suppose I could go for either forum. :) Thank you!

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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63591

  • rish19
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Hello, i was recently diagnosed with ITP, My platelet count went to 10K only and WBC counts are also higher than normal. If anyone in the forum is still active please reply as soon as possible, I need many suggestions. Thank you.

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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63603

  • 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
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2350
What do you need, Rish?

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Recently Diagnosed, Need Otrs To Ta 2 years 2 months ago #63661

  • Kevin
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Hey I’m Kevin i’m a 17 year old kid from the Bay Area lol! I’ve been living with ITP for about 3 years now. And I would love to talk to you about things lol. For I still have my own difficult challenges I need to face in life and maybe we can talk about em together? txt me at 510-709-9148
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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63681

  • Abi2000
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Hey Rish! My platelets have been that low, I know how bad it feels. I'm here to talk to and give suggestions, what kind do you need?

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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63682

  • rish19
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Thank you for the response friends... I want to know the treatments that you had taken and their response.. I was diagnosed 2 months ago.. I'm currently on revolade (eltrombopag) 50mg ..I had taken revolade 25mg along with rituximab injections (which were given weekly) for a month which boosted my platelets up to 150K on the third week..But on fourth week it again dropped down to 30K...I had also taken IVIG and Prednisone which didn't work.
Is there any harmful side effect of revolade ?
What are the other treatments which doctor can give me...If the 50 mg revolade also didn't worked?

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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63688

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
  • Posts: 1695
  • Karma: 10
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rish, if 75mg of Revolade doesn't work either, many go on to try Nplate, aka Romiplostim.

It seems some folks don't respond to Revolade at all, and with others, it isn't potent enough to raise counts. In either case, Nplate can often work where Revolade has not.

Good luck.
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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63689

  • rish19
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Hal, how long these treatments can go ?

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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63691

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
  • Posts: 1695
  • Karma: 10
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rish19 wrote: Hal, how long these treatments can go ?

For most folks Revolade and Nplate does not help with remission - and so it would be forever. In a small number of folks (row 2 in my ITP table), remission does occur.
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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63692

  • rish19
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What are other precautions that I can take ?
Is there any treatment in Ayurveda or homeopathy ?

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Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63693

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
  • Posts: 1695
  • Karma: 10
  • Thank you received: 242
As described in my ITP table notes, staying away from things one is allergic to, and/or, avoiding gluten if one is Celiac, are two precautions. These seem to be the most common things reported here on PDSA forum.
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Recently Diagnosed, Need Others To Talk To

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