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Rollercoaster or not? Informal survey 3 months 4 weeks ago #72386

  • AnnaM
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Hi everyone, I was wondering about your experiences with platelets counts. It seems to me that a lot of itp patients have to deal with the famous rollercoaster and that hasn’t been my experience at all. 
For some context: I’ve been diagnosed with itp (I for idiopathic at the time) as a teen when my doctor ordered a cbc because I was sick all the time. My count was stable around 100G so nothing was done beyond monitoring. Since then it’s been veeery slowly dropping and now, twenty years later, I’m hovering around 60G. The thing is, I never had any ups and downs like I’ve seen in many of the testimonies on this forum. My platelet count does tend to drop about 40G lower in my third trimesters (I have three kids), but that’s it. My last pregnancy necessitated treatment, they tried steroids and then ivig and it did nothing, so they finally did a transfusion during labour which barely raised my count (but that’s to be expected, esp. since they later found I’m positive for HLA antibodies). My lack of response to treatment made the specialists re-examine the itp diagnosis, but actually, digging for information online, I almost find my ever-steady counts more significant.
What’s more I seem to be as symptomatic as some patients with lower counts. I’m often covered in bruises and my periods are a nightmare. 
What do you think? Have any of you had steady counts for decades?

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