Trying to connect the dots: Hello friends and... - Vasculitis UK

Vasculitis UK

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Trying to connect the dots


Hello friends and encouragers.

I have a rare bone disease called Kienbock's. Wondering if anyone has been diagnosed with this along with vascultis or lupus OR any other autoimmune disorder. Kienbocks is avascular necrosis of the lunate bone, a carpal bone making up the joint of your wrist. Necrosis is death by loss of blood flow to bone. Even more rare about this disease- I have the condition in both wrists and it was not caused by injury, which in most patients diagnosed, it is work or injury related in the dominate wrist. This has led me to believe it may be autoimmune related or vascular/peripheral related. I have many symptoms of lupus or a GI auto immune disease and they have steadily worsened.Finally in to see to specialist in the autoimmune/mystery disease world. Would love to chat wit you all in the mean time. I am a young mother that needs answers. Thank you! - Leah

10 Replies

I don't know if this is connected, but my husband who has GPA (Wegener's) has had Avascular Necrosis of both hips and had to have them replaced. His has been attributed to high dose steroids at the beginning of his diagnosis.

Thank you for your response. I'd say shame on the doctor because steroids encourage that bone death. I will not let them give it me for any pain or my carpal tunnel etc bc of my condition. They're a bad thing for your body unless absolutely necessary. Thank you so much for taking the time to read and respond.

Steroids often are necessary in vasculitis - and if the choice is the small risk of avascular necrosis (it IS small) or going blind, or worse then it is a risk to be taken.

He had to have the high dose steroids otherwise the Vasculitis could have killed him, so better to have 2 new hips, and a new shoulder to come next year! He had cubital tunnel and had his Ulnar nerve moved. A joint up from your carpal.

Shows what I know! That is scary stuff. I am happy to hear your husband received the life saving care he needed. It has been recommended that I have ulnar denervation surgeries in both arms. May I ask how that has been for him?

Not sure what 'denervation' entails, but he started to have pins & needles/numb little & ring finger (carpal I think effects the other two fingers). He had the ulnar nerve moved but during the time before the operation he lost the muscle between his thumb & first finger. As this was his left hand and he's left handed, it's left him with a weakness. I now dig the garden & he does the ironing!!. Suits me.

my garden is my life. i need my hands !


Hi Leah,

There is a Lupus health unlocked forum it might be useful to post there as well. You don't say what your other symptoms are so it's difficult to say whether Vasculitis ( there are over 18 different variants ) could be a cause.

Just a quick note about steroids, they literally are very necessary and life savers when it comes to Vasculitis. Before the advent of prednisolone many variants of Vasculitis were fatal, there is no shame in prescribing them for GPA.

autoimmunemystery in reply to Hidden

Well three people have made this clear. Please accept my apology in my ignorance regarding steroid use in Vasculitis. My orthopedic surgeon always refused me any for my condition and pain even my carpal tunnel because he said they're very bad for me and my bones. In obviously took that very literally and seriously. Also I am very new to this forum and how the community works.

We're a mine of information here, so much to take in but always ask the question, someone here will answer.

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