03-17-2005, 06:58 AM
One of my main problems with lupus is it has caused abnormal clotting in my blood. One dr. said I have "too much" blood and a good way to help it was to go donate blood and just tell them to "dump it" as it can't be used due to my SLE. Weird, huh?
The clotting has almost caused me a finger (necrosis) and then I had 2 heart attacks that were due to clots.
Anyone else with this problem? I also have the usual joint pain, sore mouth, Raynaud's, lupus nephritis and now I've developed COPD (used to smoke cigarettes).
Would love to hear from any of you. I'm glad to find a place like this for us "lupies".
04-06-2005, 03:47 PM
Hughes syndrome, also known as antiphospholipid syndrome or 'sticky blood' is a disorder characterized by blood clotting, both in the arteries and veins.
What causes Hughes Syndrome?
Hughes syndrome is caused by the presence of antibodies in the blood, called antiphospholipid antibodies. These antibodies make the immune system work too hard, increasing blood clotting. Blood clotting can affect anyone of any age and can happen suddenly e.g. leg thrombosis or over a number of years. Symptoms could include any of the following:
* Headaches (migraine type).
* Memory loss.
* Blotchiness of the skin, which causes bluish discolouration of certain areas of the body, such as the knees and wrists.
The antiphospholipid (Hughessyndrome is a disorder of the immune system that is characterized by excessive clotting of blood antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies). Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies detectable in the blood.
Antiphospholipid syndrome is also called the phospholipid antibody syndrome. Antiphospholipid syndrome has been referred to as Hughes syndrome in honor of the doctor who first described it.
It is important to note that antiphospholipid antibodies can also be found in the blood of individuals without any disease process. In fact, antiphospholipid antibodies have been reported in approximately 2 percent of the normal population. Harmless antiphospholipid antibodies can be detected in the blood for a brief period occasionally in association with a wide variety of conditions, including bacterial, viral (hepatitis, HIV), and parasite (malaria) infections. Certain drugs can cause antiphospholipid antibodies to be produced in the blood, including antibiotics, cocaine, hydralazine, procainamide, and quinine.
Hughes syndrome is also an important cause of thrombotic disease, including thrombosis of the leg or arm or of any internal organ. As a result there is a possibility it can cause strokes and heart attacks.
Nevertheless, the antiphospholipid antibody (a protein) is not considered a normal blood protein and has been found in patients to be associated with a number of illnesses. These illnesses include abnormal clotting (thrombosis) of arteries (stroke, infarction) and/or veins (phlebitis), premature miscarriages (spontaneous abortions), abnormally low blood platelet counts (thrombocytopenia), purplish mottling discoloration of the skin (livedo reticularis), migraine headaches, and a rare form of inflammation of the nervous tissue of the brain or spinal cord, called transverse myelitis. Antiphospholipid antibodies have also been detected in over half of patients with the immune disease systemic lupus erythematosus.As the main symptoms of Hughes syndrome is the increased tendency of blood clots, the treatment is aimed at thinning the blood to reduce the risk. Treatment to thin the blood may be with drugs, such as aspirin. Aspirin makes the blood less sticky, as well as cutting down the chances of thrombosis and strokes.
There are also stronger blood thinners available, such as heparin or warfarin depending on how severe the condition is. If you are trying to become pregnant warfarin should not be taken as it is potentially toxic to the developing fetus.
If you are taking warfarin regular blood tests are required to ensure the drug is thinning the blood. Heparin needs to be given daily but unfortunately is only available as an injection and cannot be given long term.
If you have been diagnosed with Hughes syndrome you should limit the risk of thrombosis from other causes, for example quit smoking, keep to a healthy weight and get regular exercise.
04-06-2005, 06:04 PM
Wow! Thanks for all the great info! I see a new rheumatologist on April 21st--wish me luck!
04-11-2005, 08:31 AM
I Wish You The BEST OF LUCK.....Keep us posted :lol:
Peace and Blessings