Sticky Blood-Hughes Syndrome Support
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I am sorry I have not always followed and noted the Hughes Syndrome papers referenced on this site. My new internist is intrigued by my assertion that APS is associated with joint pain and sometimes sciatica, but she told me that though she believes my assertion that raising my INR lowered my hip pain by @ 30%, she says she can find no correlating info. Can you suggest any study references I might throw her way?

After not getting a diagnosis from Duke, other then the ( now) routine orthopedic surgeon take that a hip replacement will fix everything, ( even though none of the orthopods think my OA is likely causing the sciatica,) my new internist and I have produced our own half serious, half humerous diagnosis.

Since a return to tiny amounts of naprosyn has reduced the pain a further 30%, and since naproxyn is an NSAID, we reason that inflammation in the area is setting off contact inflammation and disability in surrounding tissues and nerves. We're calling it " inflamed neighborhood syndrome."

Works for me. just as long as I am better.


6 Replies

Hi there, quite a bit going on in this paper, but only scan read it so far:

Hope this helps. Mary F x


I hope you get the answers you are looking for Gina. I don't have any references specific to your query but it does raise a good point.

Is there a way of setting up a list of current literature in the medical journals related to different areas of APS? Perhaps we could put the journal details on somewhere and add a URL link to the abstract of the paper.

For example:

Donnan, P. T. and McDonald, M. J. (2009). Patients' experiences of a diagnosis of Hughes' syndrome. Clinical rheumatology, 28(9), 1091-1100.

Not sure how that could work on this forum. Perhaps an admin could ask the Health Unlocked team to see if something like that is feasible.


I have asked this question to HU.


Hi Travelnut

I have heard back from HU re having an area on the Forum we can collate a list of literature of medical articles relating to APS etc.

They say they are working on the next version of the platform which will have a section for each community which we, the Admins can place useful resources in. Quite what this will look like we will have to wait and see and also when it will happen is also open to debate. So a watch this space scenario :-)


Hi Gina

In May 2006 I woke up one Sunday morning with terrible pain in my right hip and associated sciatica type pains. I saw my osteopath, who was concerned about the lack of rotational movement in the hip, and a physio, who said he thought that I had bad arthritis. I saw my GP and she arranged an x-ray, which revealed no arthritis but found no other problem either.

I then went to see one of Prof Hughes colleagues at the London Lupus Centre and he wrote to my GP to ask her to order an MRI. This scan showed fluid in the bone marrow of the femur head, fluid in the hip joint and transient osteoporosis and some necrosis of the femur head. i saw an orthopaedic surgeon and he was certain that an APS induced ischmic incident had taken place and he said that he felt that this would resolve over time but the symptoms would take a while to go away.

He did another MRI about a month later and the fluid wasmostly gone and the bone had started to recover well. The pain and restricted movement took nearly a year to go, assisted by cycling and the good work of my osteopath.

I hope that this is helpful.

Best wishes.




Here, here on a list of articles/citations somewhere. Many of us are working with doctors who are open minded but don't have the information they need to help us. We have the time and access to this material. If we could create some sort of archive, it would be a HUGE blessing! Also, I've asked this question before, but does anyone know when Prof Hughes' book will be out? I feel like there is NOTHING in writing to share with my doctor.


Michelle in CA


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