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New ITP Member 11 months 1 week ago #71960

  • Eemu10955
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Hi, my name is Eeman,
 I am a 24-year-old who has been diagnosed with ITP since I was born, I was diagnosed when I was 6 weeks old, they found out when I was rushed to the ER with a fever. So yeah I have been living my whole life with ITP. Also, my counts were always dangerously critically low which were less than 5,000. I have had ton countless treatments in the 24 years I have lived with ITP, nothing seemed to work except for Promacta for a bit but I lost response from it and even found out the more Promacta produced platelets, the less they were functional since they would go up to a normal count. I started NPlate in 2019 and my journey with this treatment has seen results where my counts stay at 40K to 60K which is my new normal. I am a special rare case where I was born with ITP but whenever I had a bone marrow biopsy done, it is shown that my production is all normal. Also because countless platelet transfusions were done when I was younger, my body has developed antibodies towards them so there only for stricter emergencies. 
Now that you know a little about me, I hope I can make some new friends here that also may have the same experience as me through ITP. I have never met anyone who has the same or similar case to mine. 

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New ITP Member 11 months 1 week ago #71964

  • Juliandrea85
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Nice to meet you Eeman.
Happy to hear that nplate got you at safe counts.
I'm 36 years old. Diagnosed at 11, had splenectomy at 22 and a remission of 10 years ...until december 2018.
Last count: 60K
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New ITP Member 11 months 1 week ago #71965

  • MelA
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Interesting Eeman that you were born with ITP.   Don't recall seeing that here before.  Great that you have found a treatment that is keeping your count at 40-60k - happy for you!  I've had ITP sine 1989, bone marrow is fine and productive - still have my spleen since they couldn't promise me removing it would be a cure.  

Nice to meet you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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New ITP Member 11 months 1 week ago #71968

  • Eemu10955
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That's interesting that your condition went into remission, but I am guessing it came back then? @ Juliandrea85

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New ITP Member 11 months 1 week ago #71969

  • Eemu10955
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I mean I was told that I was a special rare case. Ye, I am happy also, thanks! 

Same here, they could not promise that it would be a cure so I still have my Spleen as well. 

Thanks for the warm welcome @MeIA 

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New ITP Member 11 months 1 week ago #71971

  • RR01
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Hi Eemu 10955
How much does NPlate treatment cost roughly? My numbers went down after Covid vaccine and looking for treatment options now . I am in US . Doctor suggests IvIG  , I am not sure if it will help me though ... 

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New ITP Member 11 months 1 week ago #71972

  • Juliandrea85
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Yes, i had a remission  of 10 years after spleen was removed. Since december 2018 the itp came back ... At least I took a long break

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New ITP Member 11 months 1 week ago #71991

  • MelA
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IVIg isn't really used as an ongoing treatment RR01.   And it doesn't last long at all.   Is this a hematologist who suggests IVIg?
How long ago was your vaccine - what is your platelet count - could the decrease be only temporary?

Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP Member 11 months 6 days ago #72006

  • RR01
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My hematologist suggested IvIg and says sometimes it will work (may or may not get people into remission) but  at least numbers will not drop this much and I will have some more time. I had my vaccine in may . Me and my doctor both have a doubt if  my count drop is because of covid vaccine. So I am holding off on my booster shot for now.

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New ITP Member 11 months 5 days ago #72008

  • MelA
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I've had ITP since 1989 - I recall one of my hematologists telling me he had never had an ITP patient go into remission with IVIg.
What is your count RR01?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New ITP Member 11 months 4 days ago #72009

  • Juliandrea85
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Well, long time ago, when I was a teen , I had a short remission after IVIG, lasting one year. Maybe it was just luck.

I had.my spleen then.
Now as an adult I had three IVIG, bad side effects the last two of them, and a response of a month aprox.

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New ITP Member 11 months 3 days ago #72010

  • RR01
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I am on prednisone 10 mg now , tapered to 5 mg and count is in 30-40 range 

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New ITP Member 11 months 3 days ago #72011

  • Eemu10955
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Hi RR01 
It depends on how much the dosage you are given for NPlate. You will have to talk to your hemo about cost prices since they will know best! 
Mine is covered by insurance 

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New ITP Member 11 months 2 days ago #72012

  • gozorakgogo
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I received weekly Nplate injections from July 2020 until November 2020.  Looking back at my billing invoice the cost is dependent on the dosage I was fortunate to have insurance because each injection was over $8000. My final Nplate injection on Nov 2 2020 was $8879 in Submitted Charges. That was for one treatment.

Nplate, I believe, is primarily relied upon to help to stimulate platelet production in the bone marrow. In addition to the Nplate injections I also underwent a course of four Rituximab infusions in an effort to "reset" my immune system so that it would stop destroying my platelets. 

Those two treatments in tandem have been successful for the most part since my levels have been stable over 100 since that final Nplate treatment in Nov 2020. IVIG is not really a treatment for ITP anymore than platelet transfusions. I had both when I was in the hospital in 2020. They are for temporarily elevating your platelet levels out of the "danger zone" until some other successful course of action is decided upon.

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New ITP Member 10 months 3 weeks ago #72028

  • RR01
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I never knew that NPlate injections are that expensive 8000$ for one injection ? I'm not sure if insurance would cover ..
These treatment options are extremely expensive ...

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