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ITP Splenectomy 58 years ago. 3 years 11 months ago #65760

  • kathleenosf
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I was diagnosed w/ITP when I was 4 years old (58 yrs ago). Platelet count 5. Did steroid treatment and it didn't work, later had bone marrow done found out spleen was enlarged so they removed it. Been fine up until a few years ago. Had another bone marrow test, was negative for any cancer. White cell count still runs high. Platelet goes up/down but I've lived with it. Had colon resection and gallbladder removal a few months ago but developed a blood clot in the superior mesenteric artery in the intestines b/c of my spleen being removed. The artery that went to the spleen was tied off, but backed up into the superior artery. Doc put me on Xarelto and I told him I'm not supposed to take blood thinners b/c I don't have a spleen. He said, you don't have a choice right now. Been on it almost two months. Well today had severe nosebleed and blood running out like a faucet. Took 45 min to stop. (Prob should have gone to hospital). Came home tonight, blew my nose and same thing happened. Have doc appt tomorrow but I'm afraid to find that platelets may have bottomed out. I feel damned if I take the blood thinner or damned if I don't. Can ITP come back after splenectomy and being in remission all these years? Anybody experience same situation?

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ITP Splenectomy 58 years ago. 3 years 11 months ago #65764

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi Kathleen! Yes, ITP can come back at any point after a splenectomy. Get your counts checked before you get too worried. If they did drop, treatments have come a LONG way in the last 58 years. There are many more options.

IF counts have dropped: Blood clots can occur with low platelet counts, so you need a doctor that knows how to juggle both ITP and blood clots. Please let us know how it goes!

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ITP Splenectomy 58 years ago. 3 years 11 months ago #65804

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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Let me know if you need advice on how to handle nosebleeds. I hope you don't need such advice, but I have become, alas, an expert on the topic. A nosebleed that lasts only 45 minutes sounds really easy to fix to me!

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