If
you want to these pictures you will have to email me to gain access to it. I had to
put passwords on my photo page due to some nasty people following me around online. Photos last
added: 12/03/07.
If you find any bad links or duplicates, please notify me so I can
correct them. mailto:Eyzrbrn@gmail.com
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to find out if these trials posted are something you want to persue.
I just share the information that I have found.
If
you think you may have a medical emergency, call your doctor or 911 immediately.
The Faces of APS
My Story
I have had a
long battle with Seronegative APS (SNAPS).I was finally diagnosed in 2002. It is formally
documented in my records as Thrombophilia with clinical features of APS.I also have Thrombophilia secondary to Lipoprotein(a), Livedo and Raynaud’s.
My problems started
out in grade school when I developed Fifth Disease. After that I started having problems with headaches
and bloody noses.In high school, I got the Epstein Barr Virus (EBV) and never have been the same since. I had dizzy (vertigo) spells most of my high school
and my first parts of college. My blood pressure would spike during those times. I
would have problems seeing and speaking, my body would twitch and I would have these horrible headaches.I was told that it was anxiety and that I didn’t want to be in school.I was an A/B student.From 1985 to 1992, I really wasn't feeling
well at all. I got a reprieve and finished my degree in Public Health Education and started getting active with the US Coast
Guard & Auxiliary in hopes of being accepted into OfficerCandidateSchool.But in 2000 I started
having more neurological problems and unfortunately, was forced to stop pursuing the dream of being an Officer in the US Coast
Guard.
It started again
one summer night in 2002. I had a TIA (transient ischemic attack) with an amaurosis fugax (temporarily loss of vision in the eye). The ER felt it was a migraine, as I was "too young to
have these kinds of problems". They started me on aspirin and I stopped the birth control I was taking.I sensed there was a bigger problem at play. Two months later I ended up in the hospital with a DVT (Deep Vein Thrombosis).I was started on Coumadin® and after much trial
and error my therapeutic range was set at 3.5-4.5 because I managed to re-clot on Coumadin®.However, since being placed on Plaquenil®, in 2006, we have been able to reduce my INR to 2.5-3.5. I still have TIAs despite having
a therapeutic INR and being on aspirin and Plaquenil®.
Getting doctors
to listen to me and take me serious has been a battle, especially in the ER. I never got a full clotting panel until I started
pushing for answers.That is when I got one positive test that was “equivocal”.Because of this, I started a medical symptoms journal to help track my…elaborate
on this. I also started a photo journal for the times that my face is drooping but I know by time I get to the ER or call
911 and actually get seen it will be better. I have shown these pictures to my neurologist who said that yes that is a TIA
that is triggering the migraines, specifically verterbrobasliar TIAs. The pictures I had been taking helped save me and get the diagnosis. The neurologist also
felt what I was having in high school and college were TIAs, not the panic attacks they thought I was having. I also
take pictures of the various rashes that I get. Those pictures have also helped me get on Plaquenil®. They have helped me get better treatment options from my dermatologist.I have the left sided weakness & balance issues, documented by an independent physical therapist, which are consistent
with her 80 year stroke patients. That specific therapy session was actually a good day for me physically, if that says
anything. Sadly, the verterbrobasliar TIAs are building up have caused hearing loss and they suspect is causing the increased
loss of balance.
I have also had
a heart attack. The ER thought it was “acid reflux” and sent me home. After not feeling well for
two months, I finally pushed for an answer and they did a perfusion study of my heart.They found a previous posterior MI (Myocardial
Infarction) also known as a heart attack. One and a half years later, the angiogram
shows my arteries clear so of course it was “acid reflux” and that perfusion study must have just been wrong.
It was ultimately decided that I may have Cardiac Syndrome X. Other than the supraventricular tachycardia, the occasional run of PVCs & PACs and mitral valve prolapse that has gotten more pronounced over the years; it is ok. My kidneys have decided
to give me problems but that seems to come and go also but is always blamed on hormones or salt even though I watch my salt
intake.
As time has gone on, my Raynauds/Livedo has gotten worse. My vertigo is coming back, which the neurologist, ENT and GP have decided was a microvascular issue many years ago. My headaches are getting worse again too.My guess is that it is connected to the Raynauds/livedo which is also microvascular.I have problems with cystitis that seems to only come with a flare. The urologist feels this
is due to microvasuclar changes in my bladder from my autoimmune & clotting problems.
My rheumatologist
has decided to diagnosis me with a “touch of Lupus”.They won’t call it full Lupus
because all the sudden don’t have enough symptoms or my blood work is “ok” again.I guess you need to have everything happening at once to get a real diagnosis.
Looking
back, I was never really healthy.I always had some sort of cold, some sort of
ear infection, always taking antibiotics or Dimetapp.I was always tired and
just never could keep up with my classmates.I was always cold and would turn
all these funny shades of red, white and purplish/blue.At the time, we just
thought I got frostbite easy.I never really did ok in the sun.I got “sun sick” very easy.Now I wonder how long
I really was sick.
I guess all of this is my “new normal”.I
have learned to keep fighting and pushing for answers and to keep listening my intuition; my gut feelings are generally right
on. But in the end, I am told there is nothing more they can do for me.
There are
times I think I can get back to normal. But every time, I start getting back to my old "normal" or picking up my pace my INR
drops or something else happens. I just wish I could predict how I will feel later on that week or the next day, etc.Vertigo
is my biggest problem and now these recurring TIAs. APS makes it very hard to
hold down a paying job and live a normal life.
I can no
longer do contract work or teach EMS classes because of memory & health issues.I just go with it day by day do lots of volunteering.
Antiphospholipid Antibody
Syndrome (APS) is associated with recurrent clotting events including premature stroke, repeated miscarriages, phlebitis,
venous thrombosis and pulmonary thromboembolism. It is also associated with low platelet or blood elements that prevent bleeding.
However, even more disease states have been linked with APL including heart attack, migraine headaches, various cardiac valvular
abnormalities, skin lesions, diseases that mimic MS, vascular diseases of the eye.
Founded in June 2005, the APS Foundation of America, Inc. is dedicated
to fostering and facilitating joint efforts in the areas of education, support, research, patient services and public awareness
of Antiphospholipid Antibody Syndrome in an effective and ethical manner.
A forum run by Heidi & Tina founders of the APS Foundation of
America, Inc., a non profit organization. This forum is an information source and a friendly support group for people who
have Antiphospholipid Antibody Syndrome or for anyone who's lives are touched by it. It is sometimes referred to as APS, APLS,
or APLA and is known as Hughes Syndrome or "Sticky Blood" in the UK.
APS is associated with recurrent clotting events including premature stroke, repeated miscarriages, phlebitis, venous thrombosis
and pulmonary thromboembolism. If this disease touches your life in some way, please feel free to join in our discussions!
:) We're glad to have you visit!
The National Alliance for Thrombosis and Thrombophilia (NATT) is
a nationwide, non-profit patient advocacy group representing the interests of people with blood clots and clotting disorders,
including people with the APLA syndrome. NATT’s mission is to address major treatment issues, such as preventing thrombosis
and its complications, and reducing death and illness related to thrombosis. NATT wants patients to get involved.
Background: Antiphospholipid syndrome (APS) is a recently recognized
autoimmune condition that may manifest with fetal loss, thrombosis, or autoimmune thrombocytopenia. Women with these clinical
features should be tested for lupus anticoagulant (LAC) and anticardiolipin (aCL) antibodies; most patients with APS have
both LAC and aCL immunoglobulin G (IgG) antibodies. The diagnosis of APS requires the presence of both clinical and biological
features. Systemic lupus erythematosus (SLE) is a chronic systemic disease with diverse clinical and laboratory manifestations.
LAC (and aCL) predisposes to clotting in vivo, predominantly by interfering with the antithrombotic role of phospholipids
(PLs); therefore, it is associated with clinical thrombosis, not bleeding. The antiphospholipid (aPL) autoantibodies bind
moieties on negatively charged PLs or moieties formed by the interaction of negatively charged PLs with other lipids, PLs,
or proteins. aPL antibodies belong to the large family of antibodies that react with negatively charged PLs, including cardiolipin,
phosphatidylglycerol, phosphatidylinositol, phosphatidylserine, phosphatidylcholine, and phosphatidic acid. Last Updated:
September 4, 2005
Last Updated: December 5, 2004 Based on the most recent evidence,
a reasonable target for the international normalized ratio (INR) is 2.6-3 for a minimum of 6 months for a first thrombosis.
Patients with recurrent thrombotic events while well maintained on the above regimen may require an INR of 3-4 and generally
receive anticoagulation therapy for life. For severe or refractory cases, a combination of warfarin and aspirin may be used.
Written by: Gale A McCarty, MD, FACP, FACR You are an individual
and your particular case may involve some features that separate you from the study patients. What is most likely to have
the right balance of “helpful vs. harmful” effects on you is the major concern of your physician to prevent the
effects of aPL antibodies in contributing to blood clots and cell or organ damage in you. Let’s look at the major approaches
used to manage your positive aPL test.
By: Gale McCarty, MD, FACR, FACP. Hydroxychloroquine (HCQ, or its
trade name-Plaquenil) has a long and honored history of use in systemic lupus erythematosus (SLE) as a general medication
to decrease activity of the immune system and decrease symptoms. For years it has been approved for use by the FDA for lupus
and rheumatoid arthritis, and has been used most frequently for skin and joint manifestations. It is considered a mainstay
of therapy for any patient with SLE by many lupus experts and rheumatologists. It has many mechanisms of action, some related
to decrease in the activity of the immune system, and some related to effects on blood clotting mechanisms. HCQ belongs to
the class of drugs call anti-malarials, which includes Chloroquine and Atabrine. (This does not mean that anyone thinks that
SLE or APS is caused by the agent that causes malaria-like most discoveries in medicine, it was the chance observation that
patients with some autoimmune diseases who got anti-malarial drugs to prevent malaria when traveling to likely areas of infection
noted their symptoms improved on HCQ). One of the most complete and excellent reviews of all the literature on the anti-malarials
to which all patients and their physicians are directed is Dr. Dan Wallace’s Chapter 59 in the Wallace-Hahn Dubois’
Lupus Erythematosus textbook. Another excellent review on APS therapy in general has been published by Dr. Robert Roubey.
By: Thomas L. Ortel, MD, PhD “...although the ‘lupus’
anticoagulant was first described in several patients with lupus, most patients with lupus anticoagulants actually don’t
have any of the other clinical manifestations of lupus."
Recommended therapeutic international normalized ratios (INRs) for
oral anticoagulation in patients with lupus anticoagulants who sustain a thromboembolic event are controversial. Patients
with lupus anticoagulants often have a prolonged prothrombin time, which may complicate management of anticoagulant therapy.
Autoimmun Rev, December 1, 2006; 6(2): 76-80. The concept of "probable"
antiphospholipid syndrome (APS) is almost identical with several conditions which may presage the development of the APS with
its major complications of large vessel thromboses resulting in deep vein occlusions in the lower limbs (DVT) particularly
and strokes. These conditions comprising livedo reticularis, chorea, thrombocytopenia, fetal loss and valve lesions. These
conditions, comprising livedo reticularis, chorea, thrombocytopenia, fetal loss and valve lesions may be followed, often years
later by diagnosable APS. The issue whether these patients should be more aggressively treated on presentation in order to
prevent the thrombotic complications. A new subset of the APS is proposed viz. microangiopathic antiphospholipid syndrome
("MAPS") comprising those patients presenting with thrombotic microangiopathy and demonstrable antiphospholipid antibodies
who may share common although not identical provoking factors (e.g. infections, drugs), clinical manifestations and haematological
manifestations (severe thrombocytopenia, hemolytic anaemia) and treatments viz. plasma exchange. Patients without large vessel
occlusions may be included in the MAPS subset. These conditions include thrombotic thrombocytopenic purpura (TTP), hemolytic-uremic
syndrome (HUS), and the HELLP syndrome. Patients with catastrophic antiphospholipid syndrome (CAPS) who do not demonstrate
large vessel occlusions also fall into this group. Disseminated intravascular coagulation (DIC) has also been reported with
demonstrable antiphospholipid antibodies and also manifests severe thrombocytopenia and small vessel occlusions. It may cause
problems in differential diagnosis.
Written by: Thomas L Ortel, MD, PhD “...several studies have
shown that the presence of a lupus anticoagulant in the blood is associated with a higher risk for a clot than the presence
of an anticardiolipin antibody."
The Rare Diseases Clinical Research Network was created to facilitate
collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment
of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical
outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment.
The Rare Thrombotic Diseases Consortium (RTDC) is an integrated
group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting
clinical research in different forms of and improving the care of patients with thrombotic diseases. Funded by the National
Institutes of Health (NIH), the RTDC is part of the Rare Diseases Clinical Research Network. The operations of the RTDC are
directed from DukeUniversity.
Other primary RTDC study sites include the University of North
Carolina, University of Wisconsin,
Centers for Disease Control and Prevention, and the Mayo Clinic.
By: Gale McCarty, MD, FACR, FACP. “You don’t have the
syndrome because your tests are low level or negative…” or “You have livedo, a heart valve problem, and
thrombocytopenia, but these aren’t listed as criteria for diagnosis” are comments made frequently by healthcare
providers from many specialties to patients with clinical features suggesting the Antiphospholipid Antibody Syndrome (APS).
The Thrombosis Interest Group of Canada consists of a group of 40 specialists in fields related to thrombosis who
collaborate to write evidence-based or consensus-based clinical guides on the investigation, management, and diagnosis of
thrombotic disorders.
By: Thomas L. Ortel, MD, PhD Simply put, micro-clotting, better referred
to as “microvascular thrombosis”’ describes blood clotting that is occurring in some of the smallest blood
vessels in the body.
Last Updated: October 26, 2004 Author: Barry L Myones, MD, Director of Research,
Pediatric Rheumatology Center, Texas Children's Hospital at Houston; Associate Professor, Departments of Pediatrics &
Immunology, Pediatric Rheumatology Section, Baylor College of Medicine Coauthor(s): Deborah McCurdy, MD, Director of Rheumatology,
Department of Pediatric Rheumatology, Children's Hospital of Orange County Barry L Myones, MD, is a member of the following
medical societies: American Academy of Pediatrics, American Association for the Advancement of Science, American Association
of Immunologists, American College of Rheumatology, American Heart Association, American Society for Microbiology, Clinical
Immunology Society, and Texas Medical Association Editor(s): Terry Chin, MD, Allergy/Immunology/Pulmonology; Co-Director Cystic
Fibrosis and Home Ven, Associate Professor of Pediatrics, Department of Pediatrics, Loma Linda University and Children's Hospital;
Mary L Windle, PharmD, Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy; David D Sherry,
MD, Professor of Pediatrics, University of Pennsylvania; Director of Clinical Rheumatology, Division of Rheumatology, Children's
Hospital of Philadelphia; Daniel Rauch, MD, Director, Pediatric Hospitalist Program, Associate Professor, Department of Pediatrics,
New York University School of Medicine; and Norman T Ilowite, MD, Chief, Division of Rheumatology, Schneider Children's Hospital;
Professor, Department of Pediatrics, Albert Einstein College of Medicine
written by the APS Foundation of America, Inc. This pamphlet is a layman’s
terms summary of Antiphospholipid Syndrome (APS). It covers such topics as diagnosis, symptoms, treatment, and coping. It
is meant for patients newly diagnosed, however would also be good for informing friends and family about your disease.
Founded in 1988, the American Venous Forum provides a serious academic colloquium
to physicians interested in the research, education, and clinical investigation in the field of venous diseases. The Forum
membership includes more than 225 board-certified vascular surgeons who have an accomplished record of interest and contribution
to the management of venous disease. The mission of the American Venous Forum is to improve the care of patients with venous
and lymphatic disorders by providing a forum dedicated to education and to the exchange of information concerning basic and
clinical research pertaining to the venous and lymphatic systems. In past years, the Forum has dedicated itself to academic
pursuits through vigorous educational meetings throughout the country. Today, the Forum is a diverse organization that includes
a directory of experienced investigators and clinicians, several of whom can also speak or assist in research on a variety
of venous-related topics. The Forum also offers guidelines and protocols for the development of research and clinical trials.
With the guidance of the AVF governing officers, the AVF will continue to bring medical professionals and patients the latest
venous health information. The AVF By-Laws include more information on our objectives, committees, meetings, and dues.
(APS) is a term used to describe the association between recurrent clinical
events such as thrombosis (arterial or venous), thrombocytopenia, or fetal loss and the presence of a persistent antiphospholipid
antibody 1-3. Other clinical conditions associated with the syndrome include stroke, transient ischemic attack, livedo reticularis,
migraine, epilepsy, and heart valve disease4. The syndrome is termed "primary" if there is no accompanying autoimmune disease
and "secondary" if the patient also has systemic lupus erythematosus (SLE) or an autoimmune disorder1,2,5. Certain infectious
diseases and drugs may also result in the formation of antiphospholipid antibodies which do not appear to be associated with
clinical complications and do not require therapy1,3,5.
Antiphospholipid syndrome (APS) is characterized by the following: venous or
arterial thrombosis--a condition where clots, called thrombi, form in the blood vessels; recurrent miscarriages--the repeated
loss of the fetus in pregnancies; and thrombocytopenia--a low number of blood platelets that can lead to bleeding, seen as
bruising and tiny red dots on the skin. MedicalCollege
of Wisconsin.
*Summary Points Antiphospholipid syndrome is characterized by the presence of
venous and/or arterial thrombosis and/or pregnancy morbidity and the presence of antiphospholipid antibodies. Long-term anticoagulation
is recommended for antiphospholipid syndrome patients with recurrent vascular events. For antiphospholipid syndrome patients
with recurrent pregnancy events, aspirin plus heparin is recommended during pregnacy. Promotes an INR of >3.
Antiphospholipid syndrome (APS) is characterized by the following: venous or
arterial thrombosis--a condition where clots, called thrombi, form in the blood vessels; recurrent miscarriages--the repeated
loss of the fetus in pregnancies; and thrombocytopenia--a low number of blood platelets that can lead to bleeding, seen as
bruising and tiny red dots on the skin.
The antiphospholipid syndrome (APS) is characterized by venous and/or arterial
thrombosis, recurrent pregnancy loss and the presence of antiphospholipid antibodies. The antiphospholipid antibodies (anticardiolipin,
anti-bêta2GPI antibodies, lupus anticoagulant) interacting with various coagulation proteins, platelets or endothelial cells
may contribute to disease pathogenesis. Incidence remains unknown, however the reported prevalence of antiphospholipid antibodies
in the general population is low (1-4.5%) and increases with age. The main clinical manifestations associated with APS are
thromboses, pregnancy morbidity, thrombocytopenia, neurological symptoms, livedo reticularis, hemolytic anemia. The antiphospholipid
antibodies have been detected in approximately 1/3 of the patients with systemic lupus erythematosus (SLE). High anticardiolipin
antibodies titers, lupus anticoagulant and especially anti-bêta2GPI antibodies are important predictors of APS clinical manifestations
in SLE patients. The management of thrombosis includes long-term, high-intensity warfarin therapy [International Normalized
Ratio (INR superior or equal to 3)]. For pregnancy morbidity the recommended therapy is low-dose aspirin (80 mg/day) plus
subcutaneous unfractionated heparin or low-molecular-weight heparin.
An. Bras. Dermatol. vol.80 no.3 Rio de Janeiro
May/June 2005. Antiphospholipid syndrome is an acquired multisystem disorder characterized by recurrent thromboses in the
arterial system, venous system, or both. Antiphospholipid syndrome is classified into 2 groups: primary and secondary. Secondary
antiphospholipid syndrome is often associated with systemic lupus erythematosus and less frequently with infections, drugs
and other diseases. Serologic markers are antiphospholipid antibodies, lupus anticoagulant and anticardiolipin. The primary
diagnostic criteria include arterial thrombosis or venous thrombosis and recurrent fetal loss. About 41% of patients with
lupus anticoagulant have skin lesions as the first sign of antiphospholipid syndrome. Cutaneous manifestations include livedo
reticularis, cutaneous ulceration and livedo vasculitis. The mainstays of prophylaxis and treatment of thrombosis are anticoagulant
and antiplatelet agents.
Last Updated: December 5, 2004 Author: Steven Carsons, MD, Chief, Division of
Rheumatology, Allergy, and Immunology, Professor of Medicine, Department of Internal Medicine, Winthrop University Hospital,
State University of New York at Stony Brook
In 1983 and during the following two years, the Lupus Research Unit at St Thomas published a number of papers showing that certain blood proteins
(antiphospholipid antibodies) were associated with a syndrome of clotting (thrombosis), recurrent miscarriages and brain disease.
Between 1983 and 1985, a comprehensive clinical/laboratory profile was presented showing, for the first time, a wide spectrum
of clinical features including the association with artery thrombosis (including major organs such as kidney and liver), brain
disease (strokes and other features), skin rashes, low platelet counts, epilepsy and migraine.
Most patients with venous or arterial thrombosis and APS do well with conventional
warfarin treatment (target INR 2.0 - 3.0). It is recommended that patients with recurrent thrombosis despite conventional
doses of warfarin should maintain an INR of 3.0 - 4.0. This recommendation is based on one descriptive study and requires
confirmation by randomised trials. The benefit of adding aspirin in arterial disease is not clear, and is likely to increase
the risk of bleeding.
Last updated 01.08.2005 Written by Dr MY Karim, lecturer in immunology, St Thomas' Hospital and Dr GRV Hughes, consultant physician and rheumatologist, St Thomas' Hospital
Am J Kidney Dis. 2003 Jun;41(6):1205-11. The cases reported here represent a
new aspect of the expanding spectrum of renal diseases encountered in association with APS.
Robert G. Lahita, MD, PhD WOMEN’S HEALTH in Primary Care 318 Vol.
5, No. 5/MAY 2002
APS & MS or is it APS vs.
MS??
Here
are a few articles for those of you who aren't really sure if you have APS or MS. I will let you decide. If you
doubt your diagnosis after reading these articles please get tested.
Antiphospholipid syndrome is an autoimmune disease in which the body produces large amounts of
antiphospholipid antibodies. Phospholipids are a special type of fat containing phosphate that makes up the outer walls of
the body's cells. Antiphospholipid antibodies attack the phospholipids. This causes many different problems including increased
blood clotting. Cardiolipin is one type of phospholipid and specific anticardiolipin antibodies may develop.
Please note: This information was as current as we could make it on the date given above. But
medical information is always changing, and some information given here may be out of date. For regularly updated information
on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site.
The Christine Ostwinkle Foundation for Lupus is dedicated to helping families win their fight
against Lupus, providing information and statistics regarding Lupus, and assisting researchers in finding a cure.
The Dorough Lupus Foundation is an independent, non-profit organization. The Foundation's goals
are to aide in research and educate the public about Lupus.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases of The National Institutes of Health.
Laboratory Tests Used to Diagnose and Evaluate SLE. Last revised, January 26, 1999.
This booklet is written for people with lupus and their families and friends. It explains how
lupus develops, how it affects different parts of the body, how it can affect people in different ways, and how doctors diagnose
it. We then explain how it can be treated and offer tips and advice on living with it more easily. Near the end of the booklet
you will find information on how to contact the Arthritis Research Campaign (arc), and a few suggestions for further reading.
We have also included a glossary of medical words (like cartilage). We have put these in italics when they are first used
in the booklet.
With nearly 300 chapters, branches and support groups in 32 states, the Lupus Foundation of America
(LFA) is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus.
Our mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease,
increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education,
and patient services are at the heart of LFA's programs.
Nine out of ten people who have lupus are women. Get in-depth information on lupus, its causes,
symptoms, and treatments. Plus, find daily help in our online support group.
Lupus: A Patient Care Guide for Nurses
and Other Health ProfessionalsRevised
September 2006. Lupus: A Patient Care Guide for Nurses and Other Health Professionals is intended to provide an overview of
lupus and how to care for patients who have the disease. It is not intended to provide medical guidelines for diagnosing and
treating lupus, nor is it intended to be all-inclusive. Specific medical advice is not provided, and NIAMS urges readers to
consult with a qualified physician for diagnosis and for answers to individual questions.
Founded in 1970, the Foundation helps people with lupus, as well as their families and friends,
cope with the anxieties and frustrations that often accompany daily living with a chronic illness. Sharing information and
networking among patients and their families further helps dispel myths and provides daily support to those learning to live
with lupus. We invite you to take full advantage of our comprehensive resources.
The official website of the St. Thomas'
Lupus Trust and Dr. Graham Hughes. This website contains information for medical professionals, patients and supporters.
Although nervous system involvement in systemic lupus erythematosus (SLE) is unclear and controversial,
people with lupus do often experience signs associated with the body's nervous system, such as: headaches, confusion, difficulty
with concentration, fatigue, occasional seizures or strokes.
Updated May 2004 Written by Ellen Ginzler, MD, and Jean Tayar, MD, and reviewed by the American
College of Rheumatology Communications
and Marketing Committee.
This article suggests an INR of 3 to 4 for patients with APS. Dr. Petri is one of the leading
APS specialists and this webpage would be good to show your doctor if you are having a problem getting him/her to take you
seriously that our INRs need to be higher. American Family Physician® > Vol. 57/No. 11 (June, 1998)
While progestin-only contraceptives do not increase the risk of thrombosis in the general population,
it is not known whether they may increase the risk for thrombosis in people who (a) have had a previous clot or (b) have factor
V Leiden or another thrombophilia. In the absence of data I think it is fair to conclude that one can not rule out a small
increased risk of thrombosis with progestin-only contraceptives. The concern about a potential thrombophilic risk of progestin-only
contraceptives stems from the fact that progestins used at higher doses for other purposes than contraception (dysfunctional
uterine bleeding, amenorrhea) may be associated with an increased risk of thrombosis. This is a scientific field that is evolving
and hopefully at some point in the future we will have data as to whether progestin-only contraceptives increase the risk
for thrombosis in thrombosis-prone individuals or not. Progestin-only contraceptives are: Oral pills Micronor®, Ovrette®,
NOR-QD®. Depo-Provera (= depot medroxy-progesterone) Mircette® IUD
It is by generic name. If you do not know the generic name there is a list by US brand names (and
a few for other countries) accessed by a link at the bottom of the page. If you do not know either the generic name or the
US brand name, there is a google search
link at the bottom of the page. Type in the brand name for your country and you should be able to find something telling you
the generic name. The journal references are on the pages. Where there are no journal references, it is noted that this is
his observation only. Remember smaller the sample (if it only happened to one person) the less likely it is to be applicable
to others.
Need help
paying for your medicine? Help is here for you. Established by volunteers, Free Medicine Foundation has helped countless families
across the nation completely eliminate or substantially reduce their prescription drug bills.
Our Focus
at Free Meds and Solutions is to provide you and your loved ones with programs that will save or eliminate prescription medicine
costs ,as well as a number of associated assistance programs. Our site is designed to assist you in accessing the 100’s
of Patient Assistant Programs. We provide the most up-to-date information, qualifying criteria, applications and detailed
instructions for these programs. We are available via email or our toll-free number with quick responses to any question that
you or your Physician may have.
The best
way to avoid being quacked is to reject quackery's promoters. Each item listed below signifies that a Web site is not a trustworthy
information source. The hyperlinks will take you to articles on Quackwatch that explain why. The same criteria can be used
to identify untrustworthy books, talk-show guests, etc. This page was revised on September 6, 2006
Developed
by Governor Blagojevich, I-SaveRx is available and open to all Illinois, Wisconsin, Kansas,
Missouri and Vermont residents.
The I-SaveRx program offers a safe, simple and affordable way to purchase the medication refills you need - at savings of
up to 80%!
Eligibility:
This program is designed to identify if the patient is eligible for Lovenox through private insurance coverage, individual
medication programs, and or government-funded sources. Aventis will provide Lovenox free of charge under the following qualifications.
Participants must be U.S. residents, their
annual household income must fall below the Aventis Poverty Guidelines, and they must have no insurance coverage for Lovenox.
This program is available for outpatients only. Please also see: https://www.pparx.org/ReviewResults.php#
This site
is designed to provide information about patient assistance programs which provide no cost prescription medications to eligible
participants.
The Partnership
for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers,
patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines
they need through the public or private program that’s right for them. Many will get them free or nearly free. Its mission
is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site,
the Partnership for Prescription Assistance offers a single point of access to more than 275 public and private patient assistance
programs, including more than 150 programs offered by pharmaceutical companies. To access the Partnership for Prescription
Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669).
Patient
Advocate Foundation's Co-Pay Relief (CPR) Program provides direct co-payment assistance for pharmaceutical products to insured
Americans who financially and medically qualify. We are pleased to announce that beginning on January 1, 2006 CPR will begin
welcoming new Medicare Part D beneficiaries who require assistance with their pharmaceutical co-payments. The Program offers
personal service to all patients through the use of CPR call counselors; personally guiding patients through the simple enrollment
process.
PSI is
committed to assisting persons with chronic medical illnesses in accessing health insurance and pharmacy co-payment assistance.
Developed in 1989, PSI is a non-profit charitable organization, primarily dedicated to subsidizing the high cost of health
insurance premiums and pharmacy co-payments for persons with specific chronic illnesses and rare disorders. Families requiring
assistance in maintaining the high cost of their health insurance premiums or co-payments are offered assistance based upon
the severity of medical and financial need. PSI offers a "safety net" for persons who have expensive chronic illnesses and
for those persons who "fall through the financial assistance cracks".
Rx Outreach
is an easy and affordable way for people of all ages to get medicines they need. Through this program, people who qualify
financially can get more than 55 generic medications that treat a wide range of conditions including diabetes, asthma, heart
disease, and depression. People may take advantage of the program even if they receive medicines through another discount
program. The program is available to individuals and families with incomes of up to 250 percent of the federal poverty level.
For a family of four, this figure is about $48,000 per year.
RxAssist,
created by Volunteers in Health Care, provides physicians and other health care providers with the information you need to
access the pharmaceutical companies’ patient assistance programs.
RxHope
is the only patient assistance Internet initiative financially supported by PhRMA (Pharmaceutical and Research Manufacturers
of America) and participating pharmaceutical companies. RxHope began as a grassroots effort of the Patient Assistance Managers
and Directors of the PhRMA-member companies and has grown into the leading Internet-based patient assistance and sampling
web portal in the pharmaceutical industry. Each patient assistance request form has been custom-designed to the pharmaceutical
company's rules engine. RXHope removes the time and costs of these programs by web-enabling labor-intensive paperwork onto
the physician's computer. RxHope is an independent company, and is not affiliated with third parties who may provide patients
with no-cost or low-cost medications. Those third parties do not endorse the content or processes used on this website, including
our information collection or data storage processes.
Disclaimer:
This program is not a prescription insurance policy. This program provides discounts at certain participating pharmacies for
services. This plan does not make payments directly to the providers of health services. Program members are obligated to
pay for all health care services but will receive a discount from those health care providers who have contracted with the
discount plan organization.
Deep vein
thrombosis (DVT) is a blood clot in a vein. This condition can affect men or women of any age, race, or social status. DVT
is a potentially serious condition. Fortunately, advances in technology have made it easier and virtually painless to confirm
that you have DVT.
Antithrombin-III
deficiency can cause or lead to thrombosis, a clot forming in a blood vessel. If a clot attached to a blood vessel wall breaks
loose and travels in the bloodstream, it is called an embolus. An embolus that reaches a blood vessel in the lungs is called
a pulmonary embolism. This type of clot can block the blood vessel, cut off the oxygen supply to the lung tissue, and, in
some cases, cause death. Article Reviewed: 1999-03-17
Conclusions:
Factor VIII assay should be considered in the work-up of idiopathic, recurrent VTE. Long-term anticoagulation may be appropriate
in this setting.
Fibrinogen
is a protein that plays a key role in blood clotting. Fibrinogen is a sticky, fibrous coagulant in the blood that appears
to significantly increase the risk of experiencing one of the leading causes of death and disability - stroke.
Hypercoagulable
states can be defined as a group of inherited or acquired conditions that are associated with a predisposition to venous thrombosis
(including upper- and lower-extremity deep venous thrombosis with or without pulmonary embolism, cerebral vein thrombosis,
and intra-abdominal venous thromboses); arterial thrombosis (including myocardial infarction, stroke, acute limb ischemia,
and splanchnic ischemia); or both. Venous thromboembolic disease is the most common clinical manifestation resulting from
hypercoagulable states. Although most inherited conditions appear to increase solely the risk of venous thromboembolic events
(VTEs), some of the acquired conditions have been associated with both VTEs and arterial thrombosis. These include cancer,
myeloproliferative syndromes, antiphospholipid antibodies (APA), hyperhomocysteinemia, and heparin-induced thrombocytopenia.
Reviewed December 15, 2003
You have
to pay to view the full article. APS patients were not included in this study. However, this particular article I do have
in full. Please email me at: mailto:Eyzrbrn@hotmail.com
23 Feb,
2003 Venous thrombosis is the third most common cardiovascular disease after ischemic heart disease and stroke.1 It is common
in whites, affecting 1 in 1,000 individuals every year, and is strongly associated with life-threatening pulmonary embolism
(PE). Though the exact incidence is not known in India
it is becoming a common clinical problem because the physicians and the surgeons are now more aware of venous thrombosis.
In addition to circumstantial predisposing factors eg.surgery, pregnancy, or immobilization), genetic abnormalities, molecular
abnormalities of components of the coagulation pathway leading to hypercoagulability and, in turn, to thrombophilia have been
found in subjects who have had thromboembolic disease.
Post-thrombotic
syndrome is the name used to describe the long-term effects that can occur after you have had a venous thrombosis of the deep
veins of the leg. It is caused by damage to the veins, resulting in higher than normal blood pressure. This increased pressure
on the vein walls can damage the valves, which normally work to keep blood flowing properly through your veins. Poor blood
flow can lead to pain, swelling and leg ulcers, which are some of the symptoms of post-thrombotic syndrome. Post-thrombotic
syndrome can cause serious long-term ill health, poor quality of life, and increased costs for the patient and the healthcare
system. Last modified: 19-Dec-2003
Prothrombin
is one of the blood clotting factors. It circulates in the blood and when activated, is converted to thrombin. Thrombin causes
fibrinogen, another clotting factor, to convert to fibrin strands, which make up part of a clot.
Venous
thrombosis is the development of a blood clot in a vein. Sometimes, thrombosis leads to serious short-term and long-term effects.
A possible short-term effect is pulmonary embolism, in which the blood clot breaks into pieces, travels to the lungs and blocks
the flow of blood through the lungs. Long-term effects are known as post-thrombotic syndrome. If you have had a venous thrombosis,
you may be at risk of developing post-thrombotic syndrome.
Click
on search and type in Antiphospholipid Antibody Syndrome. There will be 400+ hits. Most of them are related to Lupus. It just
shows how closely APS and Lupus are related.
When you
cut or injure yourself, your body stops the bleeding by forming a blood clot. Proteins and particles in your blood, called
platelets, stick together to form the blood clot. The process of forming a clot is called coagulation. Normal coagulation
is important during an injury, as it helps stop a cut from bleeding and starts the healing process. However, the blood shouldn't
clot when it's just moving through the body. If blood tends to clot too much, it is called hypercoagulation or a hypercoagulable
state (also called thromboembolic state or thrombophilia).
The On-line
Archives of Rheumatology publishes original papers dealing with the clinical manifestations, laboratory investigations and
the treatment of rheumatic diseases.
The NIAMS
gratefully acknowledges the assistance of Paul Plotz, M.D., NIAMS, NIH; Phillip J. Clements, M.D., of the University of California,
Los Angeles; Jay D. Coffman, M.D., of the Boston University Medical Center; and Frederick M. Wigley, M.D., of The Johns Hopkins
University School of Medicine in the preparation and review of this booklet.
I have
problems with this. I was always told it was in my head. Too bad the heart damage showed up on my perfusion study. :o( Nitro
will help this chest pain. I am guessing this would be linked with Cardiac Syndrome X.
Peripheral
Artery Disease & Intermittent Claudication. ASPers have problems with this. A vasodialator such as Nitrogylcerin or Imdur
may help this.
Click Here to purchase APS Gear on Cafe Press!
Click here to go to the Official Support Forum of the APS
Foundation of America, Inc.
For more APS & Thrombophelia information, please click this
graphic.
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Do you send flowers to family or friends? The
APSFA has partnered with Flowerpetal.com and they have made us our own special online flower shop website! We have BEAUTIFUL
arrangements for ALL occasions for EXCELLENT prices! Click the graphic below to see our Flowerpetal.com site! Bonus:
12 % of the proceeds goes to the APSFA!
Want to help me and the hundreds of thousands other people with this disease? Use
this search engine, powered by Yahoo, and enter in APS Foundation of America - APSFA. Even better, set it to your homepage. Thanks!
