Fw: The antiphospholipid syndrome (' syndrome)

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----- Original Message -----

From: " Kathi " <pureheart@...>

Sent: Saturday, September 21, 2002 12:35 AM

Subject: Re: The antiphospholipid syndrome (' syndrome)

> This is the test that I recommended that all of you get because of the

> number of embolisms that seem to be found within our group. If you have

> already had this test and received a dx, please write to me. My rheumy

> believes taht he may be able to get some interest in it becaue it is

> concidered to be uncommon, yet I know of five of us that have this dx,

> and because of the number of embolisms.

> Kathi

>

> Dear Kathi, I had Polyurethane breast implants in 1990. I had them

> removed in 1993 but not without numerous assaults to my immune system. I

> have had high anti cardio lipid antibodies since I was

> first tested in 1992. I read the article on Syndrome and I was

> wondering if I had it since I haven't had any of the symptoms yet.

> Anyway I put myself on one baby aspirin daily. I am annoyed at

> the stupidity of the numerous doctors I have seen including a

> rheumatologist, and endocronologist and immunologist. None of them ever

> suggested that I look further into this. I have an

> appointment with a cardiologist in a few weeks. I am also concerned

> about another antibody that I have called LPa or LP small a antibody.

> That is also an antibody that can cause your blood to

> become sticky. Although I have not symptoms externally of hearty disease

> I shudder to think what may be going on internally. Please publish my

> letter as there are many women who may decide to

> have theses tests as well especially if these antibodies are prevalent

> in a larger percentage of the silicone population then the normal

> population. I also want to say that I have also had antibodies to

> the thyroid since the implants. Again none of the doctors I mentioned,

> excluding the endocrinologists who I was not seeing at the time, ever

> told me to see a thyroid doctor. I discovered that when

> you have antibodies to the thyroid it could cause cancer of the thyroid

> as well as the fact that you can have sub clinical hypo- throidism. Your

> thyroid tests will seem normal but if your have the

> antibodies your body is not using them properly. This can cause numbers

> things including fibromyalgia, exhaustion, and any of the other symptoms

> associate with thyroid disease. Please get tested

> for these antibodies by an endocronologist. It is possible that you will

> be able to feel better if and when you find out that you need synthetic

> hormones. You can also ward off a heart condition which

> can be cause by lack of the thyroid hormone. Anyone who wishes to

> discuss this information with me can email me at TheRose2@....

> Please put ANTIBODIES in the subject line. Hugs to

> all. Shelli

>

> ----- Original Message -----

> From: Kathi

> Sent: Thursday, August 29, 2002 11:48 PM

> Subject: The antiphospholipid syndrome (' syndrome)

>

> During my recheck with the Rheumy the other day, he questioned

> how many of us might have this because he has a few of us and we all

> have this, usually

> considered somewhat rare, but I told him there rare some women in

> the group with this. If you have these symptoms and have gotten no

> diagnosis or are not able

> to get proper treatment, have the doctor check for this. It is

> done through the ANA cardiolipins test.

> If you have this or get tested and it is positive, please let me

> know, so I can inform him. He is becoming very interested in the

> silicone issue and if we are right and

> we have some numbers enough to question it, he might be able to

> stir some interest in a study.

>

> Kathi

>

> The antiphospholipid syndrome (' syndrome)

>

> Written by Dr MY Karim, lecturer in immunology, St '

> Hospital and Dr GRV , consultant physician and rheumatologist, St

> ' Hospital

>

> What is the antiphospholipid syndrome (' syndrome)?

>

> The antiphospholipid syndrome (APS) is sometimes called 'sticky

> blood syndrome'. This is because people with it have an increased

> tendency to form clots in

> blood vessels (also known as thromboses). Any blood vessel can be

> affected including the veins, which are thin walled and take blood

> towards the heart, and the

> arteries, which have thick muscular walls, and take blood away

> from the heart. As a result of this clotting tendency these patients may

> develop repeated clots, eg

> in the veins of the leg (deep vein thrombosis), or in the

> arteries supplying the brain, causing a stroke. In pregnancy, the

> placenta can be affected by small clots,

> and there is an increased risk of miscarriage, particularly in

> mid-pregnancy.

>

> What is the cause of the antiphospholipid syndrome?

>

> The cause is thought to be 'antiphospholipid antibodies'.

> Antibodies are produced by the body's immune system to fight infection

> from bacteria and viruses. In

> some diseases, the immune system produces antibodies that

> mistakenly attack the body's own tissues. The result is an autoimmune

> disease, eg antiphospholipid

> syndrome. Phospholipids are phosphorus-containing fat molecules

> found throughout the body, particularly in the surrounding coat of cells

> - the cell membranes.

> The 'antiphospholipid antibodies' target the body's own

> phospholipids, and also proteins that bind to phospholipids.

>

> What types of antiphospholipid syndrome exist?

>

> When only the symptoms of the antiphospholipid syndrome occur,

> this is known as primary antiphospholipid syndrome. The secondary form

> occurs in association

> with another autoimmune disease, usually systemic lupus

> erythematosus. Both types are more common in women.

>

> What are the symptoms of antiphospholipid syndrome?

>

> The symptoms relate to abnormal clotting. Most commonly clots can

> develop in the veins of the legs (deep vein thrombosis), resulting in a

> swollen, painful leg,

> with the swelling usually starting in the calf. These clots in

> the leg may happen once, or several times. Clots may also occur in the

> lung (pulmonary embolus),

> sometimes following a clot in the leg, which breaks off and

> travels in the circulation until it lodges in part of the blood supply

> to the lung. A clot in the lung may

> lead to shortness of breath, chest pain made worse by breathing

> in, or coughing up a small amount of blood. Some clots occur in patients

> soon after starting on

> the oral contraceptive pill (oestrogen-containing types).

>

> Veins in other parts of the body may clot, including the eye, the

> kidney, the liver, and the adrenal gland.

>

> Depending on where it occurs, clotting within an artery can

> result in a stroke, heart attack, or blockage of the blood supply to a

> limb, possibly leading to

> gangrene. Such arterial diseases occur commonly from

> atherosclerosis in old age, but in the antiphospholipid syndrome they

> can happen at a much younger age.

> Hence a patient under 50 who has a stroke or a heart attack

> should be tested for the antiphospholipid syndrome.

>

> Women with antiphospholipid syndrome are at increased risk of

> miscarriage. Clots may form in the placenta leading to an inadequate

> blood supply to the foetus.

> Miscarriages in antiphospholipid syndrome usually occur in the

> second or third trimester (week 12 or later), but can sometimes occur in

> the first trimester. Fifteen

> per cent of women with three or more consecutive miscarriages

> have positive antiphospholipid syndrome tests. There are patients with

> antiphospholipid syndrome

> who have successful pregnancies without treatment, though there

> is a higher risk of complications towards the end of pregnancy,

> including pre-eclampsia,

> intrauterine growth retardation (slowing down of the baby's

> growth in the uterus), and premature delivery.

>

> Patients with antiphospholipid syndrome report a higher incidence

> of headaches, including migraines. A proportion of patients have memory

> loss, or more subtle

> abnormalities. Epilepsy is commoner in antiphospholipid syndrome.

> There is a higher incidence of chorea, also known as St.Vitus' Dance

> (abnormal sudden jerky

> movements).

>

> Patients with secondary antiphospholipid syndrome may report

> symptoms of the underlying disease. For example, patients with

> underlying systemic lupus

> erythematosus may report features including a rash on the cheeks,

> skin reaction to sunlight, joint pains, mouth ulcers, excessive hair

> loss, dry eyes, cold and bluish

> fingers, and sometimes sharp chest pains.

>

> How is antiphospholipid syndrome diagnosed?

>

> The diagnosis depends on the history, the examination, and

> special tests. The doctor will ask about clotting problems in the past

> (any history of clots in the leg or

> lung), previous strokes or heart attacks (and whether they

> occurred at young ages), less specific clues such as headaches,

> migraine, memory loss, and confusion.

> Women will be questioned about past pregnancies, and whether

> there were any complications. They will be asked specifically about any

> miscarriages, and at

> what stage of pregnancy they occurred.

>

> A lacy, net-like, red rash known as 'livedo reticularis', is

> often found in antiphospholipid syndrome, particularly over the wrists

> and knees.

>

> A simple blood test can detect the 'antiphospholipid antibodies'.

> Other blood tests can check for underlying conditions, such as systemic

> lupus erythematosus.

>

> What can your family doctor do?

>

> Your GP can ask about the features that have been described

> above, particularly clotting problems and miscarriages and can look for

> the skin rash, livedo

> reticularis. If your GP suspects the diagnosis, they can either

> send you for a blood test to look for the 'antiphospholipid antibodies',

> or refer you to a specialist.

>

> When to refer to a specialist?

>

> If the GP suspects the diagnosis from the features described by

> the patient, or if the specific blood test is positive, the patient will

> be referred to a specialist. The

> specialist can be either a rheumatologist (joints and soft

> tissues expert), or a haematologist (blood disease expert). Both these

> specialists have experience in

> diagnosis and treatment of the antiphospholipid syndrome. They

> may perform further tests to confirm the diagnosis. They may also

> perform tests to look for

> damage caused by antiphospholipid syndrome, which could include

> other blood tests, echocardiogram (ultrasound scan of the heart), and

> MRI scans.

>

> Treatment of antiphospholipid syndrome

>

> Because of the increased tendency to clot, the main aim of

> treatment is to 'thin' the blood, so that this tendency is reduced. This

> is usually achieved with a tablet

> called warfarin, which is an anticoagulant (literally

> anti-clotting). This is taken daily, and regular blood tests are

> required to ensure that the warfarin is thinning the

> blood to the required degree. This blood test is referred to as

> the INR (International Normalised Ratio). This test compares the

> tendency for the patient's blood

> to clot against a standard blood result. Warfarin treatment is

> given to patients who have antiphospholipid syndrome characterised by

> recurrent clots.

>

> Patients with antiphospholipid syndrome who have recurrent

> miscarriages can also be treated, but not with warfarin as it has the

> potential to cause foetal

> abnormality if given during pregnancy. Treatment of such patients

> is with either aspirin, or another anticoagulant, heparin. Sometimes

> both are used. Heparin

> needs to be given daily during pregnancy by injection under the

> skin. Patients are usually taught how to do this, and most manage

> without difficulty. It can also be

> given by nurses. Unlike warfarin, there are no blood tests

> usually required to monitor heparin treatment.

>

> At present the recommended treatment is low dose aspirin,

> providing there are no contraindications.

>

> Some patients have positive antiphospholipid antibody tests, but

> have never had a thrombosis or a miscarriage. Research into the best

> treatment for such patients

> is currently being carried out. At present, the recommended

> treatment is low dose aspirin. Aspirin acts on platelets (small blood

> cells involved in forming clots) to

> reduce their stickiness, and hence reduces the ability of the

> blood to clot.

>

> Living with antiphospholipid syndrome

>

> If correctly treated, the patient's outlook is good. The risk of

> further clots both in arteries and veins is reduced in patients who

> receive treatment with warfarin. But

> the treatment needs to be long term or even lifelong, as there is

> a high risk of further clots in patients who stop warfarin treatment.

>

> Patients should also reduce their risk of thrombosis from causes

> other than the antiphospholipid syndrome. They should stop smoking, make

> sure they are a

> healthy weight, and take regular exercise. The doctor will assess

> their other risk factors for thrombosis - by measuring their blood

> pressure to rule out

> hypertension, checking their glucose levels to rule out diabetes

> and measuring cholesterol levels.

>

> Women who have suffered several miscarriages have subsequently

> had successful pregnancies. Treatments include aspirin, heparin, careful

> supervision by

> obstetricians and physicians, and regular scanning to check their

> baby's wellbeing.

>

> Further information on antiphospholipid syndrome ('

> syndrome)

>

> Website: www.hughes-syndrome.org.

>

> A patient booklet can be obtained from Lupus UK, 1 Eastern Road,

> Romford, Essex, RM1 3NH. Telephone: 01708 731251.

>

> References

>

> Khamashta MA. Management of the antiphospholipid syndrome. CPD

> rheumatology 1999 Vol 1 No.1.

>

> GRV. The antiphospholipid syndrome, A historical view.

> Lupus 1998; 7 Suppl 2: S1-S4.

>

> Dr.Graham . ' syndrome. A patient's guide to the

> antiphospholipid syndrome.

>

>

>