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Hughes Syndrome APS Forum

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daisyd profile image
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hi I will try and not write to much

The nerve pain in my leg, I wrote about months ago, was caused by my hip

Now going to have a hip replacement, followed by knee replacement and maybe other hip

I am having these done at my local hospital and will bridge with clexane if still on Warfarin

I am also being seen in st Thomas regarding warfarin , apparently the antiphospholipid blood tests come back negative once warfarin has stopped so will either restart it or not.

I wouldn’t have believed it unless it came from st Thomas’

So I am going to have a phone call at the end of the month to see how I am getting on with the lower inr range, 2.5 /3.5 then maybe asked to stop it witch I must admit scares me

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daisyd
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5 Replies
daisyd profile image
daisyd

sorry I should have said can come back negative

At 65 I am more at risk of falling, I must admit I did damage my rt rota cuff in a fall, but learnt my lesson and now put the lights on when going to the loo in the middle of the night !

St Thomas did ask me to try stopping Warfarin a year ago, but this time it was from Karen Breen anyone else I probably wouldn’t have believed

Will keep you up dated, if I survive

lupus-support1 profile image
lupus-support1Administrator

You have a great deal to contend with at the comment.

I wish you well for your 2 surgeries and hope St Thomas’ will resolve your concerns.

With good wishes,

Ros

KellyInTexas profile image
KellyInTexasAdministrator

Daisy d,

So sorry to hear this.

What is the actual problem with the hip(s) if you don’t mind sharing?

I’m asking out of concern, and out of hope of gaining education for me personally and possibly others reading.

It seems so many of us can have any number of things go wrong with our hips….

daisyd profile image
daisyd

hi Kelly my lt hip I think has collapsed a bit and pressing on a nerve, they haven’t exactly said , but my leg is definitely shortened and I am unable to straighten it fully ( I haven’t fallen on it) my rt hip is not painful but my knee grates osteoarthritis I also suffer from oesteonecrosis, probably the hip joints are affected,

My lt leg started having painful spasms gradually getting worse until I was in constant pain, with antiphospholipid syndrome you get so fed up of going to the doctors, I try and ignore things, but it catches you out in the end

MaryF profile image
MaryFAdministrator

I hope your operation goes well, and do address any worries you have to St Thomas' so you can find some resolution and expertise. MaryF

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