avascular necrosis

[Juliew123]

Feet problem please let me know if you suffer from avascular necrosis

[John_Mills Volunteer]

We do know of people who have suffered with Avascular Necrosis. It can affect the fingers and toes. There are one or two members of Vasculitis UK who have lost fingers and toes due to this. There is a photograph of Avascular Necrosis of the toes in the Route Map for Vasculitis. . it is most important that this should be recognised at the earliest stage as appropriate action can be taken. vasculitis.org.uk/about/rou... page 60

[Juliew123]

Thank you for your answer.

But is it part of wg or another form.

Blood test ok anca test negative.

And dose it mean upping the steroids?

What treatment will I have and how can they control it?

Can any one help me with these question.

Many thanx julie

[mamatee13]

Yes we know a bit about this as my husband has developed this in his hip. It is due to high dose steroids and is worth researching on Wikipaedia as not all GP's have experience of this.

[John_Mills Volunteer]

. There are many theories about what causes avascular necrosis. Proposed risk factors with people who have Vasculitis can include, chemotherapy and long term high dose steroids. BUT Some forms of Vasculitis including WG can and do cause Avascular Necrosis people have experienced this and have lost fingers and toes because the blood supply to the tissue is restricted and causes gangrenous necrosis. This is why it should be recognised at the earliest stage, the damage can be stopped but not reversed.

if you would like me to answer this in more detail Julie you can contact me [e-mail]

John

[kleeny]

my wife a wg sufferer,also was affected in a femoral head,which resulted in a complete hip

replacement, the hip pain started after she was put on cyclophosphamide, after 3 months she could hardly walk.after having read that cpa can result in avn in up to 11% of patients,we asked a gp to rethink her treatment but he insisted she stay the 6 month course

by the end of which she could not walk more than a few yards.then maximum dose oxycontin, for 3 months until she could have her hip replacement,then 3 months of hell coming off oxycontin,which by the way is banned in usa and canada.she was on low dose steroids so that cannot be blamed although it may still have played a part.I suggest anyone who is to be given cyclophosphamide,should do their own research,dont rely on wikipedia anyone can enter stuff on there.dont forget pharma companies are not there to help people they are there to make money.Hence oxycontin, known colloquially in the states as hillbilly heroin,and handed out by the medics in the uk like smarties,especially in orthopaedics.

Rant over!Bless you all.