Castlemans disease with ITP

[Traciek]

Has anyone with ITP been diagnosed with Castlemans disease? My 18 year old daughter, who has had ITP for two years now, had an enlarged lymph node taken out. It came back as Castlemans disease...which sometimes causes ITP. Had anyone experienced this?

[Kazpig1]

Hi I do not have castlemans disease but have just read an article written by Dr David C Fajgenbaum on 13th August 2019 He is from the university of Pennsylvania school of medicine. He talks about trialing a Drug called sirolimus (which I take for my itp) and how it has helped with his castlemans disease. And now gives people with the disease more than one treatment option. A very interesting read if you google him you may be able to learn more. Hope that helps

[Traciek in reply to Kazpig1]

I will check it out. Thank you!!