Primary Hughes but what about the lupus factor?

[Sarita]

Hi there

I have primary hughes....they are monitoring for the lupus factor....but does the Lupus factor just appear or under what circumstances might it appear? Might it never appear? Or will it surely appear but when is not clear? Can anyone clarify' Thanks

[Hidden]

Possibly not the reliable help you want, but I was told Hughes and lupus were diagnosed through a full genetic work. Possibly they just wanted to to take an expensive test, but I was under the impression what showed up / or didn't, was that (I have Hughes but not lupus)

[InSpain]

APsnotFab is absolutely right of course. Normally, here in Spain you will see the following blood test names for Hughes Syndrome written as the following: -

ANTICUERPOS ANTICARDIOLIPINA IgM, IgG and IgA and the other is ANTICOAGULANTE LUPICO. Being positive for Anticoagulante Lupico does not mean that you have Lupus. Also most Doctor's here refer to Hughes Syndrome as SAF which stands for Síndrome antifosfolipidos (Antiphospholipid Syndrome), and you will need to tell that you are positive for Síndrome Antifosfolípido Primario - The term "primary antiphospholipid syndrome" is used when APS occurs in the absence of any other related disease.

I suggest you do as APsnotFab suggests and go to the website where all this information is very clearly explained.

Good Luck from here InSpain xxx

[tchance11]

I was positive for all 3 ANA tests and also protein C deficiency. I also have a fair amount of the livedo reticulos. I had never heard of Hughes Syndrome, Had several doctors test for lupus though, always negative. I did have a borderline result for RA factor, was told by Dr like preg test, either you are or you aren't. That was several years ago, rheumatologist that diagnosed me with Fibromyalgia in 2006. This illness is very complicated! I never would have guessed that I would be learning about the clotting cascade, or what was in blood labs ,but its a good idea to to read everything you can to understand what you have. Tina

[MaryF Administrator]

Hi there, all the right tests have been done which is the main thing, and do take a look at the tests that APSnotFab has pointed you towards, as this will make it clearer.. and in a percentage of patients some also do have systemic lupus alongside Hughes Syndrome, but this not to be confused with the confusing test names! Mary F x

[Sarita]

Hi everyone and thanks for your help.

Looks like I have had both tests the line from the letter 07.01.2010 reads the following

Autoimunidad ANA + 1/160 antiDNA negative, FR negativo, Ac anticardiolipina + pte Ac anticoagulante lupico....diagnóstica Sindrome antifosfolipidos probable.... and the rheumatologist has been monitoring for the lupus factor ever since but nothing has appeared in 3 years since I was in hospital with the PE.

I managed to go for the course where I learn how to use coagucheck to do self testing and self dosification of Acenocumerol - Sintrom....the doctor showed me that I need regular lab tests to make sure my coagucheck is calibrated correctly and that the lupus factor does not show up.....as the coagucheck machine would give elevated INR results...and without a lab test you would not know the high INR factor is due to the lupus factor displaying itself....I will go now and read from the website as directed, thank you all xx