Confused....

[loublou]

I have recently been diagnosed with seronegative APL. All other tests such as anti beta etc also negative. I have had 4 miscarriages and now have bilateral avn of hips. Raging arthritis in left shoulder and obviously bone pain from hips but inflammatory bloods normal! I also have seronegative lupus. Livido makes my legs and knees look like lumps of raw liver....just on asprin though and have been for about a month. Told the APL is mild.....well to me loss of both hips isnt 'mild'. Are the negative bloods a true indicator of 'mild'?

[Manofmendip]

Hi Loublou

This does not sound mild to me.

I have suffered from transient AVN of one hip even on Warfarin. AVN often signifies ischemia or a clotting incident, so Aspirin seems a strange medication to have you on, in isolation. Where are you from and who is managing your APS (APL)?

Best wishes.

Dave xx

[loublou in reply to Manofmendip]

Hi there, I live about 20 moles west of Oxford. I saw a specialist in London just before Xmas. Not anyone from St Thomas though. Where are you being treated?

[Manofmendip in reply to loublou]

When I had my hip clot I had a consultation at the London Lupus Centre and, following their recommendations, my GP referred me to a hip consultant in Bath, who was very good.

It is possible that you need better anticoagulation that just Aspirin, Warfarin or Heparin.

Best wishes.

Dave

[MaryF Administrator]

Hi , No sero negative is not indicative of mild.Hughes Syndrome/APS. As per our last patient's day at St Thomas; it was clearly explained by Professor Rahman, about the condition and how it should be treated in the same manner as a positive test result for Hughes Syndrome/APS. As Professor Hughes's himself says - "it is not the patients failing the tests, it is the tests failing the patients" Also he himself mentioned at the last patients day about one of his cases concerning a pair of identical twins, both completely have the syndrome with full symptomatology - one has always tested positive, and the other has always tested negative! A good example. I am sero negative myself and also have Systemic Lupus and three other conditions, many patients who are members of this charity or members or this forum or both, are sero negative! Many have been treated atrociously due to tests not picking this up. I might add that I have had Systemic Lupus for decades, only in the last year, despite obvious clinical history of symptoms, have I managed to pass a test. My sisters, have Sero negative Hughes as do two of my children plus Lupus, my brother is also suspected to have it, we are awaiting the test results now.

Please see this enclosed paper which might be useful for your consultant and also perhaps purchasing the transcripts via the charity fror our last Patient's Day

You are truly lucky to have an intelligent medical diagnosis where this is rightfully suspected, but you may need more than just Aspirin.

ard.bmj.com/content/62/12/1...

rheumatology.oxfordjournals...

I and two other members of this forum are due to start on a book of patient histories regarding Sero Negative Hughes Syndrome this very year.

MaryF

[loublou in reply to MaryF]

Hi there,

Thank you for your time in replying. I think I may now consider a referral to London Lupus Centre.

[MaryF Administrator in reply to loublou]

Well done, a good decision. MaryF x