MaryFAdministrator12 years ago

Hi there, you need or rather your various medical practitioners need some more detailed guidance, let us know where you are. Do you have a GP happy to refer and help! That is half the battle, the other half is having a diagnosis which you do have. I am sure we can help thing get more finely tuned. I have three of your things as well, and another two also, it took a while to get things sorted. I am now under St Thomas' and London Bridge which keeps local things flowing better. Best wishes. Mary F x

Salty12 years ago

There are three blood tests for APS/Hughes syndrome: anticardiolipin antibodies (IgG and IgM), lupus anticoagulant, and beta 2 glycoprotein antibodies (IgG and IgM). There are also some secondary antibodies that are tested for less commonly, eg phosphatidylserine.. Some people have just one, some have all three (some have none, ie "seronegative"). Treatment depends on whether you've had a thrombosis as well as symptoms, since there are also non-thrombotic manifestations (which are often unknown to the many uninformed healthcare providers, since this is, relatively speaking, a newly described medical condition. It was first described by Prof Hughes in 1983, but it is so complex that the knowledge about it has not spread as quickly as AIDS, the other medical condition described at a similar time but is much more straightforward.

LucyLocket12 years ago

Thank you all so much for answering my question with such a wealth of information!

I think I am confused because every rheumatologist or doctor that I have seen appears to have a different diagnosis for the various different ways that this disease has affected me. I was diagnosed with Stills when I was 16 some 30 years ago - this was when I was most seriously ill with very inflamed joints, rash, fever and ultimately kidney and liver failure. However, I recovered with no long-lasting joint damage. The rheumatologist that I have just seen (Dr Elizabeth Price at the GWH in Swindon who specialises in Sjogrens) did mention the fact that I have quite a receding chin which is seen in post-pubescent Stills children - however, in her summary letter after the consultation she wrote that she thinks I have Primary Sjogrens and not Stills or Lupus.

Apart from miscarriages, my health was generally fine through my 20s and 30s but has deteriorated since I hit my 40s - I don't especially suffer with joint pains although get bouts of aching joints without any swelling. I did have a bout of pericarditis about 18 months ago and my ECG showed that my heart was performing like that of 'an 80-year-old man with angina' to quote the cardiologist! I haven't had any thrombotic events to date although the pericarditis was initially thought to possible be a PE until I had a CT scan to rule that out. I just feel that I need to know as much as possible as I have found already to my cost that you need to question doctors constantly if you feel a diagnosis is wrong (I had appendicitis misdiagnosed for 18 months.)

I have already changed GPs once since moving to the Swindon area and on the whole they don't seem to be too bad although clearly they don't like to refer unless you nag them! My problem was that I saw a GP registrar who clearly did not like the fact that I brought a list of my symptoms and known test results and suggested to her that I wondered if it was Sjogrens ( I had found out that one of the rheumatologists specialised in this and so wanted a referral) - she told me that I just had to expect to have pain 'with my condition' and that I just had to learn to live with it! I do wonder if I have a large 'H' for hypochondriac which comes up on their computers when I go to the doctors.

I haven't worked since before having my son 13 years ago and so I'm not in a situation where I can afford private health - the NHS always used to be very good but in recent years there doesn't seem to be any joined up thinking. I would like to get on top of things though as I'm currently studying psychology and behavioural neurology and would eventually like to be able to get back to some kind of career. (I was forced to study arts subjects first time around as I was not physically able enough to manage in the labs to do A level science back in the 80s!)

Thanks for any further thoughts you might have.

LucyLocket12 years ago

Many thanks for that link Lynn - I've not seen that website before and it's very interesting.

MaryFAdministrator12 years ago

Yes I certainly second all of this. Mary F x

AnnB518 years ago

Hi. I know you posted this a long time ago but I have only just joined this site. I hope you are now keeping well. I go to see Elizabeth Price in Swindon (on a private basis) approx every 6 months. It is a 10 hour round trip for me but so worth it. I have Sjogrens, RA, Psioratic Arthritis & Fibromyalgia. Dr Price is the only consultant who has properly listened to & helped me. I cannot thank her enough. I'm on methotrexate & hydroxychloroquine. Best wishes to you.

Lure2 in reply to AnnB518 years ago

Hi AnnB51,

I wonder if you also have APS (Hughes Syndrome)? Those illnesses you have been diagnosed for can also be close related to APS and are often mixed up or misdiagnosed so it is very important that you now have a Doctor who is a Specialist of autoimmun illnesses (often a Rheumatologist) and particularly in APS (Antiphospholipidsyndrome). Hope you feel well.

Best wishes to you from Kerstin in Stockholm.

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