Bone Health
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Rare Bone Disease

Hello friends and encouragers.

So I have a super rare bone disease. Here is some back story. Looking to connect some dots maybe?

both of my parents have RA, dad also colon cancer, mother sjogren's.

my rf in that last 5 years has gone 4 to 8 to 10. I know it is not much. But it is an increase in any way. Here is a brief on my craziness. If you take the time to read and reply alone, I can not thank you enough.

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

3 Replies

Hi Leah I'm sorry to hear you are having a hard time with your Kienbock's. I'm afraid I know nothing about it. I was almost in the same boat, not as rare, but no answers, although a fair amount on the internet.

One thing I do know is that autoimmune disease often passes down families, they also come in packages, have one autoimmune and a good chance you may have another, eg Pernicious anaemia - B12 deficiency, thyroid etc, and carpel tunnel is sometimes a symptom of PA . Have a read of the info. on the PAS site in Healthunlocked, it could be that you are deficient in B12 as well.

I think sometimes doctors having found one thing don't see that lightening does strike twice in my case four times.

I hope you find some answers, chat anytime you feel like it.

PS I'm an old grandmother.

1 like

Hello, how are you doing with your Kienbock’s? I know this was posted a while ago, but would love to chat about how you are managing it.

I was just diagnosed a few weeks ago and am going to have either radial shortening, bone graft revascularization or partial fusion. I am a 32 year old woman in the US.

I do not have lupus but have read that lupus is belived to put people at higher risk for kienbock’s.


Hello Jsax, I too am a 32 yr old female just diagnosed with kienbocks. Do you mind if I ask your symptoms and time frame and stage you are?


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