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Von Willebrand Disease (VWD) - Online Support Group

Newly diagnosed

#1

hey! I’m new here and just wondering if someone could help me make some sense of my test results, I have been going through testing for vwd for around 3 years, at first my hematologist told me I was borderline and prescribed me with demospresin and I was already taking birth control due to my gyn. well insurance then said they wouldn’t cover demosprein so I had to go back, I had stopped taking birth controls due to the horrendous side effects… this time with a new hematologist she told me that I did have type 1a and put my on lysteda and I have a few questions! Anybody had any bad side effects from lysteda? does it work? and how low is a 40 for ristocen cofactor because it says normal range is 55-200… thank you!!

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#2

Hi wish i could help, im type 2, i was on desmopressin and nothing else when i had my periods. had a hysterectomy so they gave it to me intravenously, and with other surgeries

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#3

I am type 2b VWD with severely dysfunction heavy uterine bleeding but Aygestin 10mg stops my period completely. They tried merena but two of them got expelled and I had horrendous bleeding since. My hematologist gave me humane p that I keep at home in the fridge and infuse for any bad episodes and lysteda that I have not tried but they say it’s really not harmful. It has a short half life. However the aygestin (or generic norethindeone which is progestin with no estrogen) is wonderful I was once down to 2.5 mg a day and no period for 5 years until I tried merana again which messed me all up so I take 10 and that works. Best advice find a hemophilia treatment center not just a hematologist they are different. My VWF is 17 which is pretty low and activity is very low too. Cvs has a program that can help you get drugs covered without insurance maybe they can help you get the dessmopressin?

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#4

Are you looking to stop periods completely? You may want to speak to your doctor about the medication Megace… it’s not a birth control so shouldn’t really get into those side effects again and it can stop periods completely. It also comes in a generic and is very cheap.

azurelle

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#5

Yea I will definitely look into that thank you soo much! Yea, we talked to my hematologist and apparently it just depends on the insurance company and now that I’ve been formally diagnosed I hope its better

#6

I will definelty look into that thank you sooo much!

#7

Oh that’s great! Hope you’re feeling better!