Hello!
So I just started taking hydra 3 days ago. My platelets are still at 1.3. My hematologist did not advice me to take aspiring because he thinks I might have Von Willebrand. Does anyone here have it?
Also, my hematologist told me that pregnancy and hydrea don’t go well together. Did anyone here take hydrea, stop then get pregnant? I’m getting married in November and plan to have a baby.
Any advice will be greatly appreciated. Thank you!
Hi. I think you need to discuss with your haematologist- I was asked several times before being prescribed hydroxy whether I was planning to have children as you cannot with hydroxy. My understanding is you will have to come off it quite a while before trying for a baby. Jx
It is correct that you have to discontinue HU prior to becoming pregnant. It is 6 months for a female and 12 months for a male. HU is a teratogen, it causes birth defects. You should also have been advised regarding the use of a condom to protect your partner from exposure as HU passes into vaginal fluid and semen.
Many hematologists no longer use HU as a first line treatment for persons of childbearing years. Pretty common. but not universal, to prefer other options to HU in persons under age 60.
Suggest going back to your hematology team and letting them know you plan to have a baby soon. There are other options to HU (e.g. PEGylated interferons and ruxolitinib) that are better options for someone of child-bearing years/plans.
Glad to hear your doc is paying attention to the possibility of Acquired von WIllbrand Disease. Some docs get so concerned about thrombosis that they forget that hemorrhage is also a risk of thrombocytosis for some. The assessment for AcqvWBD can involve more than a standard von WIllbrand Panel & ptt/aptt - INR. This is something that it is best to talk to a MPN Specialist about as it is a very rare thing to encounter. Do be aware that the Acquired vWBD can present differently than the Congenital vWBD.
I did do the full assessment panel for Acq.vWBD as I presented with a higher level of hemorrhage with prothrombin times outside of the normal range. While my vWB factors do tend to drop below norm when my platelet levels are up, I do not have the full blown vWBD. My MPN specialist did advise me to discontinue aspirin as I am more prone to hemorrhage and the aspirin was causing excessive bleeding/bruising.
Since you are planning a pregnancy, it is very important to know your actual status. The docs delivering the baby might assume you are at risk for thrombosis when in fact you may be at more risk for hemorrhage. The docs can have von WIllebrand Factor available if it turns out this is indicated in your case, but would not normally have that ready to go.
Hope that helps. All the best on your plan to start a family.
hello Margaritampn, we have some very useful information on our website about pregnancy in MPNs which I am sure will help, having a MPN does not prevent you from having children, you need to discuss your plans with your haematologist and GP.
mpnvoice.org.uk/living-with...
best wishes Maz
ET jak2 to PV
CindyS
ET and pregnancy
