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Hughes Syndrome APS Forum

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Hughes syndrome

daisyd profile image
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Does anyone on here have osteonecrosis, caused by lack of blood supply to the bones

Karen

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daisyd
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MaryF profile image
MaryFAdministrator

Hello, I have just emailed my sister to find out..she has had fractured feet and currently a fractured spine.... and like myself, seronegative Hughes! Once she gets back to me will let you know x

LisaWA profile image
LisaWA

Hi, I don't have osteonecrosis; but, this is the third time I have had a bone infection. Once in my tibia, and now a second time in my Maxillary bone (face bone) my doctor's believe there is a correlation. It is getting old...

Is your effected bone a facial or jaw bone by chance. I have done personal research and see that this is where 'we' (Hughes sufferers) can get this sort of problem.

Lisa in Washington

daisyd profile image
daisyd

Hi Mary and Lisa & all

I had a Dexa scan because I was on Clexane and thought it worked better for me than Warfarin.I have also had MRI

The Dexa scan showed I had more dence bones than what was normal,

in May I had a bone biopsy., front hip area, sorry can't remember the correct name.

The surgeon said I had the toughest bones he had ever seen (Nice)

I know I have it in a lot of places.including where the biopsy was taken in my spine and in my right wrist area. I think it is supposed to effect the ends of long bones. ( Bone was sent to London for examination)

mine proves it doesn't.

My Left side of my jaw has really ached lately and I can't eat an apple without cutting it. It has always clicked.

I have to have physio. appointment operation in May Physio not till November, If I hadn't reminded them pehaps I I would still be waiting!

You have got to take care of yourself these days.

I am on Warfarin now and doing ok when at the correct range, My back really ached but has been better since i have been off sick from work. My wrist aches sometines.

Other than that It is my brain which most affected.

Hope this makes sense

Love Karen xx

If you haven't had a MRI, I would ask for one.

Good luck, let us know how you get on please

lovemyheart profile image
lovemyheart

Hi. I have fractures in my disc, my toes. I have low Vit D. I think this must have something to do with hughes

Herb profile image
Herb

Do you know about the link between osteonecrosis and biophosphonate drugs (the most common treatment for osteoporosis)?

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