Platelet Disorder Support Association

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5 years 7 months ago #68567 by MandyR35
New to the group was created by MandyR35
My son who is almost 14, was diagnosed with ITP almost 2 years ago. We have tried all the treatments, the only ones left aren’t even approved by the FDA. It only brings his platelets up to maybe 30,000 for 2 weeks, then drop again to 2,000 or 4,000. We are considering removing his spleen, but I’m scared that won’t help either, and he will be without his spleen on top of everything else. I would love to hear from people that have or haven’t had their spleen removed. Did it help, or did it not help?
  • 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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5 years 7 months ago - 5 years 7 months ago #68571 by mrsb04
Replied by mrsb04 on topic New to the group
Mandy
What treatments has your son tried? Has he tried each in isolation or combinations?
Personally I refuse to part with my spleen. There is no guarantee a splenectomy will work, so why part with a healthy organ that is doing it's job properly?
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5 years 7 months ago #68589 by MandyR35
Replied by MandyR35 on topic New to the group
He has tried all the gobulin treatments they have, medications, they even tried one that tried to weaken his immune system but none works
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 6 months ago - 5 years 6 months ago #68672 by Hal9000
Replied by Hal9000 on topic New to the group
Mandy, be aware that because ITP is so rare, the average hematologist is not versed in all the treatments for it. Further, splenectomy is pretty rare these days. The TPO receptor agonist drugs, called Promacta, Nplate, and Doptelet have replaced splenectomy and are now common. The first two have been around for years but Doptelet was FDA approved only a few months ago.

But even that isn't the most current story. Recently, high dose Promacta (100 to 150mg) is being tried and it is working in cases where lower doses (75mg or less) would not. I would venture to guess, your doctor has never heard of treating at this dose level.
ITP Types and Treatments by HAL
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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