So what about seronegative APS?

[Romartsantos]

Hi. Reading the forum I'm not sure, yet, what to think about the so called seronegative APS.

I'm seroenegative but I have symptoms. I'm on warfarin for life. I'm not going to give up warfarin never.

I have doubts. Do we have to be cautious with infections?. Are infections the trigger for this disease?

What about vaccines?. I suffered severe symptoms one year later I put my Hepatitis B vaccine due work in the health system in 2000 and 2010. I found some research and there are relations between them.

Is there any statement about what indications do we have to have?

Thanks in advance

[MaryF Administrator]

Hi, we are about to have a section on this forum for Sero negative APS/Hughes Syndrome. Please look at the paragraph on this paper by a leading professor from St Thomas' jautoimdis.com/content/6/1/3

and also: ard.bmj.com/content/62/12/1...

Regarding triggers many things are looked at in terms of viruses and infections and some familiar patterns emerge, and some people have had none of these, it is however very important that you are under the care of somebody who fully understands this disease. Further sero negative reading comes across most clearly from the last Patients Day at St Thomas's the charity has this transcript for sale, and a section near the end Professor Anisur Rahman speaks verly clearly with authority on this matter.

MaryF

[Romartsantos]

Thanks a lot.

Just read the paper, but I dunno understand properly. In seronegative APS patients are there another markers different to Lupus Anticoagulant and Anti-B2GPI? Maybe I misunderstood.

[InSpain in reply to Romartsantos]

Good afternoon Roberto. Sero negative Hughes means that normally that the blood tests don´t show as positive. However, many people have had a stroke, deep vein thrombosis, pulmonary embolisms, TIAs or have had miscarriages or clots in the placenta to name but a few. These people are know as ´sero negative´. Therefore, the spectrum of APS is not limited to thrombosis or pregnancy morbidity and the article states that clinicians should be aware of the broad range of manifestations with multi-system involvement. Professor Hughes always says that any doctor shouldn´t only look at the test results, but should take a medical history from the patient to see what they can teach them too.

Buenas tardes Roberto. ´Sero Negative Hughes' significa que normalmente los análisis de sangre no muestran como positivo. Sin embargo, muchas personas han tenido un accidente cerebrovascular, trombosis venosa profunda, embolia pulmonar, ataques isquémicos transitorios o han tenido abortos involuntarios o coágulos en la placenta, por ejemplo. Estas personas se conocen como "sero negative". Por lo tanto, el espectro de la SAF no se limita a la trombosis o la morbilidad del embarazo y el artículo afirma que los médicos deben tener en cuenta la amplia gama de manifestaciones con afectación multisistémica. El profesor Hughes siempre dice que cualquier médico no sólo debe mirar a los resultados del análisis de sangre, sino que debe tener un historial médical del paciente para ver lo que pueden enseñar a ellos también.

[MaryF Administrator in reply to InSpain]

Thank you for your excellent clarification, often sero negative patients are treated simply as if.... (they do not have Hughes Syndrome), a very unfortunate attitude if they are indeed unwell with this.! MaryF x

[GinaD]

Remember that the immune system remains still, to a large part, a mystery. The tests we have are for markers usually associated with the symptoms of Hughes Syndrome (APS.) The reason why, by the way, its called a "syndrome," is that the cause and effect is not entirely nailed down. And until it is, the tests we now have will be usually -- but not always! -- accurate.

[designer16]

I saw prof Khasmashta & I he told me the reason I tested negative (after having a positive test in my past) was because the blood test cannot test for all the proteins (markers) in our blood. He said if they tested all the proteins than more than likely one would be positive. It is real & we are just like someone who has a positive blood test. Designer16