Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Recently Diagnosed, Need Others To Talk To

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

  • Abi2000
  • Offline
  • Posts: 7
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

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

  • Sandi
  • Offline
  • 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.

Please Log in or Create an account to join the conversation.

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

  • Abi2000
  • Offline
  • Posts: 7
  • Thank you received: 0
I'm eighteen actually, so I suppose I could go for either forum. :) Thank you!

Please Log in or Create an account to join the conversation.

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

  • rish19
  • Offline
  • Posts: 4
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

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

  • Sandi
  • Offline
  • 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?

Please Log in or Create an account to join the conversation.

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

  • Kevin
  • Offline
  • Posts: 1
  • Thank you received: 1
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
The following user(s) said Thank You: Abi2000

Please Log in or Create an account to join the conversation.

Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63681

  • Abi2000
  • Offline
  • Posts: 7
  • Thank you received: 0
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?

Please Log in or Create an account to join the conversation.

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

  • rish19
  • Offline
  • Posts: 4
  • Thank you received: 0
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?

Please Log in or Create an account to join the conversation.

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

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1695
  • Karma: 10
  • Thank you received: 242
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.
The following user(s) said Thank You: rish19

Please Log in or Create an account to join the conversation.

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

  • rish19
  • Offline
  • Posts: 4
  • Thank you received: 0
Hal, how long these treatments can go ?

Please Log in or Create an account to join the conversation.

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

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1695
  • Karma: 10
  • Thank you received: 242

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.
The following user(s) said Thank You: rish19

Please Log in or Create an account to join the conversation.

Recently Diagnosed, Need Others To Talk To 2 years 2 months ago #63692

  • rish19
  • Offline
  • Posts: 4
  • Thank you received: 0
What are other precautions that I can take ?
Is there any treatment in Ayurveda or homeopathy ?

Please Log in or Create an account to join the conversation.

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

  • Hal9000
  • Offline
  • 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.
The following user(s) said Thank You: rish19

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo