ITP

Hi I was diagnosed 9 years ago with lupus after a long drawn out journey of tests consultants etc, I have like most of you may have to the extras fibro, raynaurds, sjorgens, in 2014 I was also diagnosed with thrombocytopenia or Itp, does anyone have this, and if so how are you getting on with treatment? I have tried a lot of treatments from medication, infusions and Rituximab but unfortunately nothing is working, is anyone else having problems x

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  • My son was diagnosed with ITP when he was 17. His platelet count was at 6000, which is a critical level. The doctor called immediately after the result came in and said that I needed to get him to the ER NOW and if there was an accident, he could die. The first course of treatment was steroids at high doses. This was somewhat effective, but as soon as a taper began, his number went down again. The doctor was near to taking out his spleen, but wanted to try a course of winrho. It was infused through an IV and he was sent home. Later that day, he had a reaction to the medication and spent the night in the ER. He overcame the reaction and his platelet levels began to rise. That was 10 years ago and he has not had a problem since.

    All the best to you!

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