IVIG with CALR ET

[George1976]

Has anyone with ET/MPN ever received IVIG? I have ET and my platelets are in the mid to high 500k range on 1000mg HU daily. IVIG has a risk for blood clots but it appears to be one of the few things that might help with a severe neuropathy I’ve developed. My docs think I will be ok but I am quite nervous about it.

Thanks in advance for any replies.

[katiewalsh]

hi. I used to get IVIG for my immune deficiency but now I get it sub-cutaneously You could see if yours can be done that way or break your IVIG into 2 sessions so you’re not getting as much. Katie

[George1976 in reply to katiewalsh]

Thanks for the suggestion Katie.

[katiewalsh in reply to George1976]

Hi. This is a late response. I think if I have to do IVIG I’ll try & break it up into weekly sessions to be extra cautious unless my immunologist thinks 2 weeks are ok.