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Adults With ITP
Newly Diagnosed & Frequently Asked Questions
Hospitalized for 7 weeks now, any advice helps.
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Hospitalized for 7 weeks now, any advice helps. 1 year 8 months ago #70568

  • gozorakgogo
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where did you go and what did you do as soon as you escaped?

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Hospitalized for 7 weeks now, any advice helps. 1 year 2 months ago #71648

  • Zach Tarver
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Been a long time since I’ve updated, I got out of the hospital after 2 months with platelets at 0 basically. 2 weeks out of the hospital and my numbers went up to 300,000. I’ve been in that range for the last 6 month now! Get weekly Nplate dose of 1 and I’m almost off cyclosporine

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Hospitalized for 7 weeks now, any advice helps. 1 year 2 months ago #71697

  • mhprice2000@msn.com
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Glad you escaped! I keep having to go back in now and then when my count gets too low. Hoping yours stays up and you stay out of there!

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Hospitalized for 7 weeks now, any advice helps. 11 months 1 day ago #71881

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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Everyone deals with ITP differently. I was 0k-3k for a whole month, went to infusion center every morning to get a bag of platelets then went to work. I'm only hospitalized when bleeding won't stop or for my spleen removal (which didn't help). Currently I get n-plate every Tuesday with CBC.

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Hospitalized for 7 weeks now, any advice helps. 7 months 2 weeks ago #72172

  • MariLinTx
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  • Ret. RN/attorney, wife/mom/grandma diagnosed 2/1/22 with ITP. Fear has worn off as Doptelet is working; now I’m told I need Plavix b/c of a significantly blocked artery. I am so scared having ITP, CAD, uncontrollable BP, renal disease & mobility issues.
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I am SO sorry to hear your hospitalized so long. I’m so new to this diagnosus too -3 weeks. I spent 4 days in hospital with IVig and steroids . Sent home with numbers in 70s. Then quickly dropped to 50s and 20s. More steroids outpatient  and IVig. Counts get to 50 and drop about 10,000 per day ☹️.  Scheduled for marrow biopsy next and Ritumax (sp?) infusion outpatient. No talk of Readmittance unless numbers get below 20. I’ve not had any bleeding though. Found count at 7 only through routine labs and a few ‘bruises’ of unknown origin on my arms. 
Best of luck to you. I hope things stabilize snd you get home soon. 

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Hospitalized for 7 weeks now, any advice helps. 3 months 16 hours ago #72459

  • Toby-Wan-Kenoby
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I have been down to 0 count and my base level is 2. Also thought I was invincible. Never had a nose bleed. Worst was couple of blood blister in my mouth. 
Last Monday I had a 5 minute episode where I first lost mobility in my right hand fingers and then lost the ability to speak. Drove to the nearest hospital. CT confirmed small brain bleed platelet transfusion stopped that. Still 2 day stay. Now I am scared of low levels. I just measured myself after IVIG yesterday at 11 and today it’s down to 9 again. It’s scary. 
Diagnosed 7/2019 let the fun begin...

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Hospitalized for 7 weeks now, any advice helps. 2 months 4 weeks ago #72462

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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TOBY1
Are you being cared for by haematologists who specialise in ITP?
Were you not given TXA?  
Platelet transfusion is a waste of a donation  if it is a platelet destruction ITP.
IVIg is only ever a temporary fix (if it works) and can cause Hep B +ve antibodies. 

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Adults With ITP
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Hospitalized for 7 weeks now, any advice helps.

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