Lupus Anticoagulant

[Christine7]

Hi, I've recently been diagnosed with Lupus Anticoagulant is this the same as APT or Hughes Syndrome? I'm waiting for haematology appointment so don't really know much about this. Is it genetic and can I have passed this to my children. Thanks

[Christine7]

Sorry I meant APS not APT.

[Lure2]

Hi Christine,

Lupus Anticoagulant is one of the 3 antibodies that has to be positive to have a diagnose of APS (Hughes Syndrome). Lupus is another autoimmun illness often conneted with APS.

The other 2 autoantibodies required for a diagnose of APS are the Cardiolipinantibodies (often IgG and IgM) and Beta2Glycoprotein 1.

It can be passed over to the next generation in some cases but it is not found to be genetic as far as I know.

With the right treatment we can live a rather normal life. The blood has to be thinned as it is too thick

Hope that is ok for an answer so far.

Best wishes from Kerstin in Stockholm

[Christine7 in reply to Lure2]

Thanks, I've been told I'll be taking warfarin indefinitely but when I google lupus anticoagulant it goes to APS and Hughes Syndrome. I have been told that I won't necessarily develope lupus as this is different. Is lupus anticoagulant something that you can "grow out of" or have I got this for life? X

[Manofmendip in reply to Christine7]

Hi Christine and welcome.

Lupus Anticoagulant is not a disease in itself, it is one of the three tests for APS/Hughes Syndrome, which are two names for the same disease.

Many on here are on lifelong Warfarin. Your consultant should set you a target INR (International Normalised Ratio) level, which is a measure of your clotting time, i.e. it shows how anticoagulated your blood is. For many conditions where people take Warfarin their target INR level is set between 2 - 3 but many people with APS find that they need an INR of between 3 - 4, in order to achieve effective symptom control. Prof Hughes suggests seeing INR levels like the types of milk: INR 1.0 (whole milk), INR 2.0 (semi-skimmed). and INR 3.0 (skimmed); people not on Warfarin will have an INR of around 1.0.

You will need regular blood tests to check your INR and to adjust your Warfarin dose. Some foods affect INR levels, those rich in Vitamin K antagonise Warfarin and lower INR, while excessive alcohol intake increases INR. The thing with food and alcohol, when on Warfarin, is consistency. Try to eat about the same amount of Vitamin K rich foods each day and, if you are going to drink alcohol, to drink about the same number of units each day.

Where are you from and who is managing your INR.

Best wishes.

Dave

[Christine7 in reply to Manofmendip]

Hi Dave, thanks for the explanation. I'm from the UK and see a consultant neurologist at my local hospital who is very good but I've only seen him once, I'm due to see him again in July. In October last year I had some kind of seizure, my husband thought it was a stroke and called 999 but apparently it wasn't a stroke but was suspicious of epilepsy caused by a venous sinus thrombosis. I have an INR target of 2-3 and get this checked regularly. I'm waiting for an appointment with a haematologist which is in August. I am quite lucky to have insurance and last week went for an MRI as I've been having constant headaches for about two months and have recently felt an area at the back of my head which feels bruised, this has been their for about a month. I've got to go back to see another neurologist on Thursday for the results.

[Manofmendip in reply to Christine7]

Hi Christine.

I was diagnosed by a neurologist but, generally, they appear not to be the most helpful in managing this disease. indeed, the last one that I saw even denied that APS existed and he told me that forums like this were just places for people to talk themselves ill and dream up symptoms.

Many on here find that they get on better seeing a Rheumatologist and our charity has a list of UK specialists:

hughes-syndrome.org/self-he...

You might find that your headaches would improve with a higher INR and you should ask about this.

We have started a patients' group in the Bristol/Bath area and there may be others around the country.

Best wishes.

Dave

[Christine7 in reply to Manofmendip]

Thanks, I'm in the Midlands and the nearest specialist is in Birmingham. I may see if my insurance will agree to a consultation.

[Manofmendip in reply to Christine7]

Let us know how you get on.

[Lure2]

Hi Christine,

I am not a doctor and you ask difficult questions.

I have APS with all the 4 antibodies and also in high titres since 13 years. I have not been diagnosed with Lupus. I am said to have "primary APS".

For some members the antibodies "go away" (they are not seen on a bloodsample) for a short or a longer period of time. Still we can not stop warfarin as they can be seen again at a high, midium high or low titre.

Some people are diagnosed APS with no antibodies at all only on symptoms. That is called sero-negative APS. Not accepted in all countries though as a proper diagnose for APS.

I do not know where you live but I suggest you buy the book "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms and how it is to live with this illness also. You will not find the latest drugs for APS there but the symptoms are the same today.

Kerstin

[Christine7 in reply to Lure2]

Thank you Kerstin I will read the suggested book if it's available, I'm in the UK. X

[MaryF Administrator]

Hi there, yes you have Hughes Syndrome/APS despite the misleading test name, there are several tests, this just one of them. Please do familiarize yourself with our charity website which carries lots of useful information: hughes-syndrome.org/

You have not necessarily passed this on to your children, some of us do have problems in our extended families, but not everybody. Where are you located?

MaryF

[Christine7 in reply to MaryF]

Hi MaryF, I'm from the uk. Thanks for information I think I have an awful amount of research to do. X

[MaryF Administrator in reply to Christine7]

Lots of books for sale on the charity website, some by medical staff and some by patients, you will find this forum helps you an awful lot. MaryF

[GinaD]

APS is an autommune disease. Our immune systems are pretty efficient. Once your body learns to overcome disease invadors, it memorizes identifying marks of the invador as well as the recipe for the best invador attack munitions. Unfortunately, the system is not fool proof. The body can make mistakes and mis-identify aspects of its own body as an invador, and then mount an atack on that body component.

If the body confuses joint tissue with an invader and so attacks joint tissue the patient is daignosed with rheumatoid arthritis. If you body attacks certain collagen components in the skin that can eczema.

In lupus as well as APS the body is mistakenly attacking components of the circulatory system. The blood tests which help diagnosis APS are part of an array of blood tests which measure immune activity in a patient's blood. These blood tests, often grouped under the name "rheumatological assays" can go up or down from week to week. The biochemistry of the tests is quite complex andd scientists have not matched all the steps between exposure to an antigen and exactly which immune system is activated using which parts of the immune system.

So, to repeat an example I often use on this site, if you happen to push your cart down a grocery aisle just behind someone sneezing his head off that exposure to a bug might prompt your immune system to rev up the defenses and start churning out antibodies. But except for pehaps feeling a tad tired that day, you may never know your body has gone on a major defensive manuver. But if you had blood work drawn that day many of your rheumatological markers may have been strongly positive, which in my hypothetical case, may not have indicate the presence of an antoimmune disease but just that some bloke with a nasty cold sneezed in your air space.

Therefore most autoimmune disease are not diagnosed unless a patient presents with symptoms which diminish with treatment, AND/OR blood work which remain positive for that disease over a 12 week period.

And yes, some doctors -- I've, sadly, met one -- believe that some of these makers are so quixotic that they are useless for diagnosisng an autoimmune disease. Other doctors insist there is no such thing as autoimmunity -- sadly, I've met one of those too -- and a round of homeopothy tretment and some counseling will set things to right.

And the disagreement again, stems from our as -yet incomplete understanding of exactly what goes wrong in the autoimmune process.

You asked about genetics? My understanding is that you can inherit a tendency to autoimmunity, -- in other words, an autoimmune system computer system which is prone to errors -- but it takes an environemental factor to actually start the autoimmune disease. Many doctors and patients who have experience with Hughes have noted a relationship between our disease and glandular fever (in the US called mononucleosis) as well as unrecognized sensitivity to this or that food -- usually gluten.

There! Sorry for the long post, but autoimmunity is a complex issue.

[Christine7 in reply to GinaD]

Thanks Gina, sounds very complicated. Lots of reading for me I think. X

[Tinythepanda]

Professor gordon is based at City hospital and is fantastic. If you can get a referal to her you'll be in very safe hands.

[Christine7 in reply to Tinythepanda]

Thanks, I'll try.