Doe's anyone suffer from Avascular Necrosis. - LUPUS UK

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Doe's anyone suffer from Avascular Necrosis.

gazzasoens profile image
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gazzasoens
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Jil4403 profile image
Jil4403

I have bilateral AVN in both hips. I have been advised that the cause is due to long term steroid use for SLE. It is excruciatingly painful. Had core decompression in right hip in September, however, not much improvement.

gazzasoens profile image
gazzasoens in reply toJil4403

Hi Jil4403 I have had a hip replacement because of this and now the pain is in my knee's, shoulders and my good hip. what is decompression just incase they offer it to me. ta.

Jil4403 profile image
Jil4403 in reply togazzasoens

Like you, I also have pain in my knees and ankles. Both hips will be replaced when they become diseased but ortho surgeon reluctant to do so at the moment. Decompression was when they drilled a hole into the hip bone to try and stimulate the blood supply.

sandwiches profile image
sandwiches

I have AVN, I was diagnosed last year after my bone scan which i have every year because of my kidney transplant. I have it in one hip at the moment. My doctor said that i may need a hip replacement. My hip bone is wearing away and the pain is hurting me right now. I take a lot of paracetamol, but it only stops for a while. I have had high doses of steroids since 1999 when i was diagnosed with lupus. My AVN leg is a lot bigger than my other leg and it is lot more heavier. I am only 47, i am way too young for this. The cold weather makes it more worse. Terrible pain.

gazzasoens profile image
gazzasoens in reply tosandwiches

Hi sandwiches i am only 45 i had my left hip done 10 years ago. I walk like an old man now. Sorry to be dumb but what is avn? Is it Avascular Necrosis. I have tried loads of different painkillers and the only ones that work, make me feel worse (more tired and depressed because I feel so tired) . so catch 22.

sandwiches profile image
sandwiches in reply togazzasoens

It is avascular necrosis. My hip bone is wearing away because of the steroids i have been taking since 1999. High and low doses of steroids. The lupus has affected my joints especially my hip. Paracetamol only releives the pain sometimes. I also used to diaylsis through my leg. that is also still painful even thou i have had a transplant. i also suffer from depression, but i am trying to work through it.

gazzasoens profile image
gazzasoens in reply tosandwiches

I know how you feel, I have been on steroids since 1994 and have had left hip replaced, but I have never been diagnosed with AVN. I am going to see orthopaedic specialist about my knees and hips and shoulders and neck tomorrow, so will ask how bad my AVN is. Keep your head up, we only have 1 life make it the best you can.

sandwiches profile image
sandwiches in reply togazzasoens

Thanks for your encouragement. Will try to keep my head up.Starting back to work training courses, so that will keep me busy. Hope all goes well when you see your specialist.

gazzasoens profile image
gazzasoens in reply tosandwiches

Is the courses E.S.A..

sandwiches profile image
sandwiches in reply togazzasoens

No, I have been taken off ESA because they said i am fit enough to go back to work. The courses are through JSA. Can't start them until end of march as there are no places at the moment.

gazzasoens profile image
gazzasoens in reply tosandwiches

Hi sandwiches why don't you reapply. I lost it but I am fighting it. I have just re applied for E.S.A. Don't let them win. get help from C.A.B. IF YOU NEED IT.

sandwiches profile image
sandwiches in reply togazzasoens

I had already reapplied for ESA, but i had a tribunal dec2013 and was refused after being kept on tenterhooks for nearly a year during my appeal. My transplant doctor wouldn't write me a letter as she said that i was fit enough to go back to work. I am willing to go back to work, but i can't do as much as DWP think that i can. I will be taking it easy, don't want to be back in hospital when things get too much for me.

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