Dear mother1031-ga;
Thank you for allowing me to answer your interesting question. Please
note our disclaimer that we cannot provide medical advice. What I have
endeavored to do is to provide you with the latest PUBLISHED
information in hopes that you might find some pertinent information
concerning the research and treatments for this syndrome.
You are correct that one of the therapies for Hughes Syndrome involves
the use of Coumadin, but to say that Coumadin is the only form of
therapy is inaccurate. There are a variety of anti-coagulants and
anti-clotting medications (and combinations of them) that are used to
combat this disease from Heparin or Warfarin (yes, it?s a form of
Coumadin) down to over-the-counter ?baby? aspirin. The drugs used are
usually commensurate with the severity of clotting. The widely
acceptable treatment, as you generally describe, continues to involve
the use of anti-coagulants such as Coumadin and Coumadin-like drugs
though other approaches are also being sporadically used in an effort
to discover the best treatments (sometimes on a case-by-case basis, as
you will see below).
A blood test, referred to as the INR (International Normalized Ratio),
is usually administered and it compares the tendency for the patient's
blood to clot against a standard blood result. Depending on the
physical condition of the patient and the severity of the tendency to
clot different therapies are applied to bring about different results.
Warfarin treatment is given to patients who have antiphospholipid
syndrome characterized by recurrent clots. Patients with this syndrome
who have a history of recurrent miscarriages are not candidates for
Warfarin because it can has the potential to cause birth defects.
These patients often receive a regimen of aspirin, or another
anticoagulant, such as heparin because it does no cross the placenta.
Depending on the patient, sometimes both therapies are used. Heparin
treatments are often self-administered daily by the patient through
injections under the skin.
At present it appears that the recommended treatment is low dose
aspirin, providing there are no contraindications. For many thousands
of patients, one ?junior? aspirin a day (approximately 75-80 mg, or
one quarter of a regular aspirin) is all that is required. Patients
are now also counseled to stop smoking, make, maintain a healthy
weight, exercise regularly and continue to be monitored for conditions
that can compound the syndrome such as hypertension, and abnormal
glucose and cholesterol levels.
Of late, there have been other progresses made in the treatment of
Hughes Syndrome. For example (and I quote here rather than risk
potential error that paraphrasing might cause):
Clopidagrel (aka Plavix)
?This drug has a mechanism similar to aspirin in making platelets less
?sticky?. Although expensive, there are real reasons for looking at
Plavix. Firstly, Plavix does not have the irritant effects on the
stomach which can occur with aspirin (fortunately rare with the low
dose). Neither is it a problem in asthmatics, who may prove allergic
to aspirin. Thirdly, huge studies in cardiology, where aspirin and
plavix have been compared in the prevention of heart attacks, have
thrown up some evidence that, under certain circumstances, plavix may
have an edge over aspirin.?
Intravenous Immunoglobulin
?This consists of an intravenous preparation of protein (globulin)
pooled from a large number of donors. It is extremely expensive, and
its action is short-lived. Some years ago, it was found to help in
some cases of thrombocytopenia (low platelets) and has since been used
in a variety of autoimmune diseases with mixed success. Despite, its
apparent limitations, it has a good safety record, and is being tried
in some patients with Hughes? Syndrome, particularly those with low
platelet counts.?
Immunosuppressives
?These drugs (most commonly azathioprine and methotrexate) are widely
used in auto-immune diseases such as Lupus and rheumatoid arthritis.
They have proved disappointing in patients with primary APS. So also
has plasma exchange ? an attractive idea for removing antibodies, but
with little convincing published success ? as yet.?
Antimalarials ? hydroxychloroquine (Plaquenil)
?An extremely useful drug in Lupus and Sjögrens Syndrome. It is
particularly effective in helping skin rashes, fatigue, and aches and
pains. One of the additional actions of Plaquenil is as a (mild)
anti-clotting agent ? rather like junior aspirin. Thus, in Lupus
patients with aPL it might well have extra, hidden, benefits.?
HUGHES SYNDROME TREATMENT
http://www.hughes-syndrome.org/treat2.htm
There is some suggestion, though it has not been clinically proven,
that a diet high in omega-3 EFAs (found abundantly in oily fish) might
also be beneficial to the treatment of this condition, but the irony
here is that these are also rich in Vitamin A which is also thought to
be harmful during pregnancy.
Through research Hughes Syndrome is now easily diagnosed by simple
blood tests. The good news is that once diagnosed, the disease can, in
most people, be treated, and further thrombosis (clotting) prevented.
The bad new is that the lack of awareness. Even now, if doctors do not
look for Hughes Syndrome specifically they will not find it. As you
probably already know, if left undiagnosed the disease can lead to
continued migraine or headache, deep vein thrombosis (including
?economy class syndrome?), memory loss, giddiness, recurrent
miscarriage, late foetal death, infertility, pulmonary embolism,
stroke, double vision, sudden visual loss, low platelet counts and
bruising and multiple sclerosis-like symptoms just to name a few.
The effort to understand more about this condition is in its relative
infancy since Dr. Graham Hughes at his team at the Lupus Unit at St
Thomas's Hospital first identified the malady only 20 years ago. Dr
Munther Khamashta from St Thomas's Hospital's Lupus Unit, a leading
expert on the condition, is in the process of a major five-year
clinical trial which began in 2004 involving 1,000 women continuing to
establish whether certain combinations of aspirin and Warfarin can be
effective in treating the disease. Consultant obstetrician Siobhan
Quenby is also carrying out lab experiment and clinical trials to work
with does and combinations of Heparin and aspirin. While she knows
that Heperin works, she admits that precise dosage for optimum effect
is not fully understood, but feels optimistic about the trials.
Professor Steven Krilis, of the Department of Immunology at St George
Hospital published a research report in ?Proceedings of the National
Academy of Sciences of the United States of America? (2004) a
discovery, after 15 years of research, that he said could eventually
lead to the development of drugs to target Beta 2-glycoprotein 1 and
help regulate these clotting conditions. In it he said, ?"Beta
2-glycoprotein 1 is the major protein involved in this condition and
appears to be an important mechanism for the switch-off cycle in clot
formation. We believe this is a regulator of the clotting system which
was not previously identified". What this potentially means is that
they may have identified the protein responsible for the syndrome and
as such may have a new starting point for additional research.
UNIVERSITY OF NEW SOUTH WALES
?New hope for DVT sufferers - research breakthrough?
http://www.unsw.edu.au/news/pad/articles/2004/jun/Krillis.html
The National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS) and the National Center on Minority Health and Health
Disparities (NCMHD) are sponsoring a clinical trial involcing 200
patients with antiphospholipid syndrome in an effort to collect
clinical information and blood samples from people with APS. Hopefully
this registry will aid the research and provide some answer to many
questions.
CLINICAL TRIALS.gov
http://www.clinicaltrials.gov/ct/show/NCT00076713;jsessionid=39E958748C64444DBFCED597BFC7508C?order=42
I hope you find that my answer exceeds your expectations and I wish
you the best in your search for a treatment for this condition. If you
have any questions about my research please post a clarification
request prior to rating the answer. Otherwise I welcome your rating
and your final comments and I look forward to working with you again
in the near future. Thank you for bringing your question to us.
Best regards;
Tutuzdad-ga ? Google Answers Researcher
ADDITIONAL INFORMATION SOURCES
NET DOCTOR
http://www.netdoctor.co.uk/diseases/facts/antiphospholipid.htm
HUGHES SYNNDROME
http://www.hughes-syndrome.org/what4.htm
ARTHRITIS RESEARCH CAMPAIGN
http://www.arc.org.uk/newsviews/arctdy/117/aps.htm
SEARCH STRATEGY
SEARCH ENGINE USED:
Google ://www.google.com
SEARCH TERMS USED:
ANTIPHOSPHOLIPID SYNDROME
HUGHES SYNDROME
TREATMENT
HEPARIN
WARFARIN
COUMADIN
ASPIRIN
CUTTING EDGE
TECHNOLOGY
RESEARCH
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