Von willebrand

[Melaniem59]

Does anyone else with ET also have low Von willebrand, I've had to stop aspirin completely & awaiting a clotting clinic appointment

Would be grateful for any experiences you may have

Melanie

[Ebot]

Yep! Can't recall the exact number offhand but I know it's low. I have PV with high platelets (I was originally diagnosed with ET). I'm just on venesections and continue with aspirin every other day. In my case I think the low VWD along with low iron might be a fallout from the delicate balancing act that is Platelets / haematocrit / venesections.

[Melaniem59 in reply to Ebot]

Thankyou very much, yes I think it's a balancing act between clotting & bleeding!

Keep well & Thankyou for replying

Mekanie

[Lab-Rat]

Hi Melanie, I have ET Jak2+ with low Von Willebrand factor. Because of the low VWF I cannot take aspirin. Aspirin should not automatically be given to anyone presenting with platelets >1000 without first checking Von Willebrand factor since there is an association of very high platelets and low VWF. I was diagnosed with ET after excessive post operative bleeding. I was allergic to Hydroxycarbamide and have been on Pegasys for 3 months. After two months of weekly injections of 90 mcg my platelets reduced from 1400 to below 400. I am now injecting 90 mcg fortnightly. I still feel ill the day after injecting so I inject on Saturday evenings so that come Monday I will be ready for work (I work full-time). Greetings from South Africa.

[Melaniem59 in reply to Lab-Rat]

Thankyou so much Yvette, great information, I am the same - ET, jak2 & now vw! How old are you? I'm 47 in October & where in SA? I come to Cape Town every year in January, fingers crossed

Keep well & thank you

Mekanie

[Lab-Rat in reply to Melaniem59]

I am 53 and am in Pretoria. I too holiday in Cape Town most Januaries! Best wishes.