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TOPIC: Newly Diagnosed, 2nd Crash Below 5 in 2 Weeks

Newly Diagnosed, 2nd Crash Below 5 in 2 Weeks 1 year 2 months ago #66966

  • cedrap
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Hi there,
I was just diagnosed with ITP after a platelet count of 3 on 6/28/19. I stayed in the hospital for 2 days, got up to 46 with transfusion, IVIG, and steroids, then stayed at my mom's for 2 more days and got up to 165 on 7/2/19. I started finding a smattering of petechiae and my nose was bloody when I blew it (never bleeding without being blown/wiped), so I contacted my hemotologist and came in a day early for my re-check. I'm at 4 today (7/9/2019). I'm so discouraged. I was naively hoping this would be a one time fluke (possibly related to a vaccine a got - my hemotologist said it's possible) and I was fixed. They aren't sending me back to the ER this time, but I'm basically under house arrest except for daily blood draws. I'm scared. Part of me is scared to go to sleep. I don't want to have an auto-immune disease.

I guess what I would like to hear is: How low have other people been without going to the ER? I was told by a doctor that I could stay home if I wanted but now I'm scared.

Thank you all for your help

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Newly Diagnosed, 2nd Crash Below 5 in 2 Weeks 1 year 2 months ago #66968

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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I've never been to ER even with a count of 2. ER docs don't understand ITP like haemos do. Why are you under house arrest?
Just be careful when out & about. You rule your ITP it does not rule you.
Platelet transfusions are complete waste of a donation in my opinion. They don't work in ITP and should only be used to raise counts in life saving emergencies.
Are you still on steroids and if so what dose?
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Newly Diagnosed, 2nd Crash Below 5 in 2 Weeks 1 year 2 months ago #66969

  • cedrap
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This helps a lot! Thank you! I was originally on a shorter-lived steroid (dexamethasone?) for 4 days (6/28-7/2). Then I was off all medications to see what would happen. Obviously I tanked. Now I'm on a longer course of prednisone. First 4 days are 80 mg.
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Newly Diagnosed, 2nd Crash Below 5 in 2 Weeks 1 year 2 months ago #66970

  • sillyman
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Hey don't get scared. I've seen worst. Your condition is nothing to worry about but to concern. Just accept your condition and try do understand its behaviour. Experienced haematologist always helps. Don't do stupid things that other people do or you did before. Stay away from drinks and try to avoid things that can make you bleed.
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Newly Diagnosed, 2nd Crash Below 5 in 2 Weeks 1 year 2 months ago #66971

  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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cedrap,
I was just diagnosed at the end of May 2019. I have not been to the hospital as my lowest count was like 21 with no bleeding just some unexplained bruising. Dex did not work real well for me either and I am currently tappering Pred that started at 80 mg now at 60 mg. The Pred got my counts up to 92, but have been steadily falling. I am considering Rituxan or Promacta as the next step if counts keep dropping. These forums will provide a ton of helpful information. From my short experience with this disease, I can tell you it is a roller coaster ride. Just try to keep a positive attitude!
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