Yes I get palpitation with that kind of number - needless to say I felt stupid not reading into the signs and symptoms when it tanked to 3 (I thought of not much when I had petaechia, slight bleed in mouth and nose...). I got IVIG in Jan 17 but not when it was 2 in Sept 2015....bled like a pig at home then.
It was 2 in Sept 2015 when first diagonsed, then went on prednisone and splenectomy (Aug 2016), it shot up to 260's in Dec 2016. Then it tanked to 3 a month later in early Jan.
My Rituxan (4 weekly infusions) was done in early Feb, 17. 3 days ago my platelet was 160's. My doc restarted me on prednisone thinking the response from Rituxan may not be that quick...
I got real scared when reading the first paragraph about Rituxan ..."Many had lethal or fatal reaction at first infusion...pre medicate is essention". I then realized prednisone WAS my saving pre medication. I sailed thru the first infusion with NO prob..(Nurses were checking my vital signs every 1/2 hr? therefore the first infusion was 4-5 hours long. From then on, every infusion was a mere 90 minute.
If you survived the first infusion, the rest should be piece(s) of cake! No worries!
My hematologist says it is encouraging to see my numbers nowadays and thinks that might just be the Rituxan kicking in - of course it takes time....I read 2/3 of people achieve remission with Rituxan. But then I also read the same rate of success about splectomy...yet I failed to respond to splenectomy....wish I can have my spleen back.
At this point I am most concerned about my immune suppression (from being on prednisone since Spet 2015, yes!, from having Rituxan, and from having no spleen - even though I had all the necessary vaccination, it's no guarantee about fatal infection...). What have you been told by your doctor regarding Rituxan and immune suppression??
Chat soon & u will be fine with Rituxan infusion. It's more what comes after that you should be concerned, in my opinion. (ie how you respond, and the degree of immunosuppression, making us sitting duck for life threatening infections). But we have to carry on living, just a bit smart about thins.
Thank you! It's lonely world being ITP as many know. I am in Canada so thankful that we have socialixed medicine here but I still spent tonnes of energy/time navigating thru the system. I am now happy with my hematologist but still vigilant in tems of communicating my goals are at each appointment.