Osteonecrosis and other rare bone diseases

[mickeymouse42]

Hello

Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury in the knee or ankle is the prelude). The symptoms are that it is very painful to walk; there is no treatment apart from minimising walking. MRI scanning is the main tool used in diagnosis.

Osteonecrosis and avascualar necrosis (AVN) appear to be labels for related diseases. 

Not much appears to be known about the diseases. I would be interested in hearing from anyone else who has had spontaneous osteonecrosis.

The other thing that might be of interest is that Oxford University's NDORMS MSK Research department is running an epidemiological study called Rudy that is looking into rare bone diseases including Vasculitis, XLH, AVN. The epidemiological study will provide case studies for their research. It appears that they might be planning to do research into osteonecrosis if they can find enough case studies (one of the reasons for this posting).

The link to the study can be found here: research.ndorms.ox.ac.uk/rudy/

Hope this study proves useful to other people with rare bone diseases.

[Hidden]

Thank you for this I had never heard of this before. I have had what I feel to be bone pain for years - initially thought to be part of my RA - but this went into remission. However the bone pain worsened over the years and has been diagnosed and treated as Raynauds and small fibre neuropathy. I read someone's description of it today as turning legs to stone. In my case it affects my hands and mouth as well as my legs now. The specialists bat me to and fro and don't know what to do with me because I have raised to high levels of inflammation in my blood and other signs but my autoantibodies are always either equivocal or negative so they just stick with calling it RA in remission. I'm told that it can't be Vasculitis unless it shows up in a rash and my cryoglobulins show up positive. 

So which kind of specialists diagnose osteonecrosis and is it autoimmune or musculoskelital can you tell me? Does it show up in blood or urine or bone biopsy as Amaloidosis and Multiple Myeloma do?  I've never had any part of me looked at with MRI apart from my neck and brain. I will read up but I'm grateful to you for this information. 

[mickeymouse42 in reply to Hidden]

if you get osteonecrosis in the knees (it is often abbreviated to SONK Spontaneous OsteoNecrosis of the Knees), a GP will typically refer you to orthopaedics mainly because they can see that you are struggling to walk.

The problem with diagnosing spontaneous osteonecrosis is that it usually manifests itself in a minor ligament strain so it is easy to assume that it is a trivial problem. The only way you can tell whether you have osteonecrosis is to have an MRI scan - an XRay will not show up SONK but an MRI scan will.

What causes osteonecrosis is the speciality of bone metabolic consultants, endocrinologists and rheumatologists (not orthopaedics). Finding a specialist is hard as osteonecrosis is a rare disease compared with diabetes, rheumatoid arthritis and osteoporosis and the other diseases that these specialities tend to focus on.

[ruthgriffith in reply to Hidden]

 its autoimmune  please   start    eating less   red meat   and dairy  products  with this   and    start taking   more  minerals and  vit c  2000mg a day

our bones  need   boron ,  calcium  and  magnesium to stay   strong  with out them  our  bones   become   brittle,

if you buy  glucosamine and   chondroitin    it will help the  bones    it  even   repairs  cartilage  

[mickeymouse42 in reply to ruthgriffith]

your suggestion that osteonecrosis is an autoimmune disease interested me. I can certainly find the link the between an autoimmune disease like Lupus and osteonecrosis - it appears the steroids used in Lupus treatment can in rare circumstances cause osteonecrosis.

However I am struggling to find articles that suggest that osteonecrosis is an autoimmune disease itself. This is partly because lots of articles on osteonecrosis are written by orthopaedic surgeons who are focused on repair of the joint. 

Any links that osteonecrosis is an autoimmune disease would be much appreciated.

[EOLHPC]

Hello jmc42

Interesting subject.  just wish you weren't having to manage spontaneous osteonecrosis

It sounds as if there is no chance your version of this is steroid-induced?

Over the years, I've met a few lupus patients with osteonecrosis/AVN which consultants were saying was steroid-induced.  One young woman has it in her hip joint...major surgery has been proposed

Am curious though: Are you diagnosed with an autoimmune condition?  Have you ever been prescribed steroid treatments?

A few years ago in my mid 50s ( just before I began treatment with steroids & immunosuppressants for what has turned out to be infant onset lupus...am also vascular type ehlers danlos hypermobile, and my lupus is the Vasculitic type) I was treated for what consultants thought was osteomyelitis of the upper jaw bone.  Since then, rheumatology & immunology researchers have queried whether this might've actually been osteonecrosis.  I was on daily high dose flucloxacillin for 5 months.  Which pretty much cleared this up, although my consultants suspect it may be in there simmering even now.  The sinuses on that side of my head are also involved

So, I'm grateful for your link: fascinating

And am glad you posted....will be interested to follow the replies

🍀🍀 coco

[mickeymouse42 in reply to EOLHPC]

Hi

Thanks for the reply. Yes I have read that osteonecrosis can be caused by steroids. Osteoporosis of the jaw is another type of osteonecrosis that can be brought on by side effects from drug treatments - certain cancer drugs and osteoporosis drugs can cause osteonecrosis of the jaw in certain patients - see this article on the National Osteoporosis Society's website:

nos.org.uk/document.doc?id=...

Unfortunately the version I have is caused by some unknown biochemical imbalance in the body. The only anomaly found in my blood tests is chronic Vitamin D deficiency which has been linked with osteonecrosis:

bjjprocs.boneandjoint.org.u...

I doubt if medical researchers would say that Vitamin D deficiency causes osteonecrosis but the relationship between a healthy bone metabolism and Vitamin D is well known. If you have osteonecrosis (or any bone disease), then getting your Vitamin D levels checked make sense.

Again the National Osteoporosis Society has issued guidelines on Vitamin D deficiency:

nos.org.uk/document.doc?id=...

This 1 page summary done by York CCG summarises the issues succinctly:

valeofyorkccg.nhs.uk/rss/da...

The Vitamin D metabolism is itself a complicated issue and though much is known about, much is also not known about it. 

Vasculitis is one of the diseases that the NDORMS epidemiological Rudy study is interested in so joining it might be worth doing. 

[EOLHPC in reply to mickeymouse42]

Glad of these links, thanks

Yes, vit D does seem to be important in many ways.  My D levels are closely monitored (so far have good levels, but I do take supplements)

Because of my history of osteomyelitis/osteonecrosis of the jaw, rheumatology has been v cautious about my osteoporosis treatment, but last autumn I did have my first IV Zoledronate infusion...although only after thorough checks at my dentist/oral surgeon's practice to be sure i was unlikely to need any significant work done after being given this big dose of bisphosphonate (treatment with bisphosphonates is associated with cases of osteonecrosis of the jaw, but, haha, only 'rarely').  So far I've shown no signs of the osteomyelitis flaring...

I wonder how close researchers are to understanding these crucial bochemical imbalances...for instance, many of my consultants think it was months of daily inutero exposure to the notorious artificial oestrogen DES that tipped me over into infant onset immune dysfunction.  But there isn't yet enough of the right research to be sure about this.  Maybe I will sign up with Rudy

[mickeymouse42 in reply to EOLHPC]

Rudy is just a study to find patients with a disease - it is a funnel for their research programmes. The consultant who runs it has skype patient forums and he explains that it is very difficult to find patients with Vasculitis, AVN etc. We do not have a National Patient Records system and there is no way that a MSK research centre can contact thousands of GP practices to find patients with relatively rare diseases. They would be better off posting in HealthUnlocked!

This article on Vitamin D article shows just how complex Vitamin D is:

ncbi.nlm.nih.gov/pmc/articl...

It suggests that Vitamin D deficiency is caused by inflammation rather than vice versa. There are 2 tests for Vitamin D, 25-hydroxy, the common accurate one and the 1,25 test which the article focuses on and claims is important in determining how well the Vitamin D metabolism is working. I would guess that the article is quite theoretical - NICE has done evidence based studies on the drug it talks about (olmesartan) but not in relation to what is suggested in the article. 

I showed the article to my GP but he did not like the fact it was an American article! He did not seem to be aware that the NIH is funded by the American government and publishes articles of a similar quality to the NICE evidence studies.

[EOLHPC in reply to mickeymouse42]

Yes, argh, I've also run into this uk scepticism re NIH info!  Playground Politics!

[ariele]

Hello jmc42,

Reading your article made me feel a little less lonely in my illness!

I have something very similar to you: I was diagnosed as having osteonecrosis on both knees and in the right heel. It started one year ago and since then I am walking with crutches and still have pain.

One month before it started I had my first and only cortisone infiltration in the spine, so I wonder whether this might be related. Any primary cause has been excluded, as well as any autoimmune illness and vasculitis. But when the problem first appeared it was diagnosed that I had a Vitamin D deficit, which still continues to be on low level.

As I can see your article is 2 years old, and I would be curious to know whether you have had any improvements and whether information in the Rudy study helped you to diminish your pain and increase your walking ability.

I am very much looking forward to reading your news.

[biggiraffe]

0Hi There, I was diagnosed with avascular necrosis (idiopathic) two years ago and needed a total left shoulder replacement.My right shoulder is now problematic, I previously had both hips replaced due to osteoarthritis and have had lower spinal decompression.

I am wondering if anyone else has other rare diseases alongside this condition?

I was diagnosed with dercums disease which is a connective tissue disorder and Lichen sclerosus.