She had recently been diagnosed with avascular necrosis in her knee, and hadn't heard of it before.
I went to Dr Donald Thomas' The Lupus Encyclopaedia for answers, and it turned out he had a whole chapter on it.
I'm not going to give you his entire chapter here (because that would get me into a whole lot of trouble with copyright laws), but I'll give you a quick summary, and if you want more you can go to the book.
Let's start with definitions: "avascular" means there's no blood supply getting to the area; "necrosis" means death. Avascular necrosis of the bone can also be referred to as AVN or osteonecrosis. ("Osteo" means bone.)
AVN isn't all that common. About 5% to 10% of lupies will develop it, and those will usually, but not always, be people who've been taking high-dose steroids. (Yet another element to add to our love-hate relationship with our steroids.)
It's most likely to be in the femur (thigh bone) at the hips, or in knees or shoulders. Many people who get it, will get it on both sides of the body. If it is in your hip, you would be most likely to feel the pain in your groin.
There are three ways AVN can be treated:
- For stage 0 and 1 AVN, joint protection is an option. Use a walking stick when walking, only do low impact exercises. Lose weight if you need to. See a physiotherapist to develop an exercise routine that protects the damaged area.
- Conservative management involves pain control: non-steroidal anti-inflammatories, etc, possibly even opioids, if necessary. Alendronate (an osteoporosis treatment) may also help. Pain control alone does not stop the AVN spreading.
- For stage 2, 3 or 4 AVN, surgery is the only real option. An orthopaedic surgeon will be needed, to replace the affected joint.
As I said, there's a lot more information in The Lupus Encyclopaedia. As with everything, don't panic, and please don't just stop taking your steroids just because you read this. This affects very few lupies, and for many of us the benefits of steroids will outweigh the risk. If you are worried, talk about it with your GP or your Rheumatologist.
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