Rheumatoid and Hughes

Hi to all.

My mum has had Hughes syndrome from birth coupled by rheumatoid arthritis from 20 years ago.

She is due to have surgery in a couple of months for a total knee replacement.

If there is anyone out there in a similar position or that has had a similar operation?

She is only 48 and ia curious about peoples experiences

Thank you .

Last edited by

10 Replies

oldestnewest
  • I had a Core Decompression in place of the total hip as i never had an operation since my Dia. of APS in 2009

    I am an 80% risk factor for any surgery so what they did is called Bridging where they tapered down my warfarin and started me on Enoxaparin a week prior to surgery and i was monitored for the week i was in hospital --after the procedure i was slowly put back on the warfarin and tapered down the Enox.

    They had never operated on an APS triple positive patient before ,so i was the first for them

    every thing went fine - and my recovery was swift .

    if i can be of more help please feel free to call on me Casey and I

  • Thank you for your kind response.

    Could i ask how long the recovery period would be.

    The doctors have told her they have to monitor her in the hospital for a week or more in case of complications.

    She has been moved to warfarin aswelll

  • I was in the hospital about a week and i had in home VNA care.

    that was for a couple of weeks.

    we APS patients are all different so nothing will be exactly the same .

    I premed myself for the surgery buy getting lots of sleep and taking care of myself .

    you said they just moved her to warfarin now ??

    They most likely will take her of the warfarin days prior to the procedure and put her on something else --with me it was Enox .

    they kept me on the enox. for 9 weeks - & after surgery to test my S and C protein levels as they can't be tested while on warfarin and they recover slow so i stayed on the Enox. longer than i did the second surgery .

  • Please make sure she has adequate VTE prevention with anticoagulation, don't be fobbed off by the Orthopaedic surgeons with Aspirin alone.

  • Hi there,

    Thank you for your concern.

    The good news is that they will treat her in UCL so they will be administering the best medicine from doctors who specialize in this syndrome .

    Hope you are well.

  • That is good news, best of luck, do let us know how it goes. MaryF

  • Where are you and your mom from ??

  • We have been living in London for 12 years and she has been treated the whole time.

  • England I assume

    we here in new Hampshire USA have a lot of the same names of cities as England

    So some times I need to ask. look at a map of our New England states and you will see what I mean :-) !!

  • I had a hip relacement in 2013, bridged from and to warfarin and was fine: Tell her not yo worry and to look forward to a pain free knee and less total body inflammation.

You may also like...