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?
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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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?
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.
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