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Recently Diagnosed, Need Others To Talk To

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6 years 1 week ago #63175 by Abi2000
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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  • 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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6 years 1 week ago #63178 by Sandi
Replied by Sandi on topic Recently Diagnosed, Need Others To Talk To
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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6 years 6 days ago #63192 by Abi2000
Replied by Abi2000 on topic Recently Diagnosed, Need Others To Talk To
I'm eighteen actually, so I suppose I could go for either forum. :) Thank you!

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5 years 10 months ago #63591 by rish19
Replied by rish19 on topic Recently Diagnosed, Need Others To Talk To
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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  • 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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5 years 10 months ago #63603 by Sandi
Replied by Sandi on topic Recently Diagnosed, Need Others To Talk To
What do you need, Rish?

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5 years 10 months ago #63661 by Kevin
Replied by Kevin on topic Recently Diagnosed, Need Otrs To Ta
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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5 years 10 months ago #63681 by Abi2000
Replied by Abi2000 on topic Recently Diagnosed, Need Others To Talk To
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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5 years 10 months ago - 5 years 10 months ago #63682 by rish19
Replied by rish19 on topic Recently Diagnosed, Need Others To Talk To
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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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago #63688 by Hal9000
Replied by Hal9000 on topic Recently Diagnosed, Need Others To Talk To
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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5 years 10 months ago #63689 by rish19
Replied by rish19 on topic Recently Diagnosed, Need Others To Talk To
Hal, how long these treatments can go ?

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago #63691 by Hal9000
Replied by Hal9000 on topic Recently Diagnosed, Need Others To Talk To

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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5 years 10 months ago #63692 by rish19
Replied by rish19 on topic Recently Diagnosed, Need Others To Talk To
What are other precautions that I can take ?
Is there any treatment in Ayurveda or homeopathy ?

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago - 5 years 10 months ago #63693 by Hal9000
Replied by Hal9000 on topic Recently Diagnosed, Need Others To Talk To
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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