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Hughes Syndrome APS Forum

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Hi all

rach1081985 profile image
6 Replies

Hi everyone I'm bk its been while.. I'm rach 33 2 kids...ive been diagnosed nearly 12 years now.. I take rivaroxaban as warfarin didn't seem work. Ive been intensive care twice and 2 major PEs both lungs twice. And clots elsewhere. Been left with vein damage both leg due DVT.... Had a pregnancy which resulted in my girl being born at 33 weeks...all ended uo well and she now 8 and doing well..I have a permanent ivc filter and was steralised at 29 which had beg 4... Life is good at mo...feel free message or ask me anything

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rach1081985
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6 Replies
HollyHeski profile image
HollyHeskiAdministrator

Welcome back, your story is sadly a common one for us.

So glad your children and you are doing well and thank you for sharing and offering to help others.

rach1081985 profile image
rach1081985 in reply to HollyHeski

Its ok and thank u hope u ok x

MaryF profile image
MaryFAdministrator

HI, welcome back, hope life is good! MaryF

rach1081985 profile image
rach1081985 in reply to MaryF

Thsnk u all is good u OK

Tofino5 profile image
Tofino5

Hi, I also didn’t do well on warfarin. That seems rather uncommon as most people are fine on it. I take apixiban, which works in a different way from rivaroxiban.

Was your clotting while you were on warfarin? How long have you been on rivaroxiban?

I’m glad you’re doing well.

rach1081985 profile image
rach1081985 in reply to Tofino5

I clotted while on fragmim abd aspirin while pregnant really bad. Yes it is rare and been on rivaroxaban 8yrs best thing ever touch wood stays thst way...feel free message me xx

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