I think that we learn to tolerate the daily grind of life with lupus if we know there is a light to be seen at the end of the tunnel. If only we can grasp the goodness that life has to offer in the moment........The moment is all we have.......That makes some of the pain seem palpable.
In this holiday season.......May we all live in the joy of the present and the ever prevailing moment known as "LIFE".........Be it as it is. We are blessed.
Addressing Lupus- By All Means.
Monday, December 20, 2010
Tuesday, December 14, 2010
Lupus according to Dr. Andrew Weil
Lupus according to Dr. Weil
What is lupus?With variants known as discoid lupus, subacute cutaneous lupus, and systemic lupus erythematosus, lupus is one of several disorders of the immune system considered "autoimmune" in nature. These diseases occur when the immune system malfunctions and turns its infection-defense capabilities against the body, producing antibodies against healthy cells and tissues. These antibodies promote chronic inflammation and can damage organs and tissues. In lupus, these antibodies are known as antinuclear antibodies (ANA) because they target parts of the cell's nucleus. Experts don’t yet fully understand all of the factors and triggers that cause inflammation and tissue damage in lupus, and research is ongoing..
What are the symptoms?Flare-ups of lupus can cause acute inflammation and damage to various body tissues and can affect the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Some of the most common symptoms are painful or swollen joints, unexplained fever, kidney problems and extreme fatigue. A characteristic red skin rash - called a "malar" or "butterfly" rash because it roughly mimics the insect's shape - may appear across the nose and cheeks. Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Because many lupus patients are sensitive to sunlight, skin rashes often develop or worsen after sun exposure.
What are the causes?
The underlying trigger to develop these antibodies in lupus is unknown, although experts believe that a combination of genetic, environmental, and possibly hormonal factors are involved. The fact that lupus can run in families suggests that there is a genetic basis for its development, but so far no single "lupus gene" has been identified. Experts suspect that several different genes may be involved in determining an individual’s chance of developing the disease, as well as which tissues and organs are affected, and how severe the disease will be if it does occur. Other factors being investigated as contributing to the onset of lupus are overexposure to sunlight, stress, certain drugs, and viruses and other infectious agents.
What is the conventional treatment?The medical doctors who treat lupus are rheumatologists who specialize in arthritis and other inflammatory disorders. However, depending on the individual, case treatment may involve a wide range of health professionals including clinical immunologists (doctors specializing in immune system disorders), nurses, psychologists, social workers, nephrologists (kidney disease specialists), hematologists (specialists in blood disorders), dermatologists, and neurologists.
Drugs used to treat lupus include nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen, alone or combined with other drugs for pain, swelling, and fever. Drugs that work inside cells, including antimalarial drugs such as hydroxychloroquine (Plaquenil) are used for fatigue, joint pain, skin rashes, and inflammation of the lungs. Continuous treatment with antimalarials may prevent lupus flare up from recurring.
However, the mainstays of treatment are corticosteroids such as prednisone (Deltasone), hydrocortisone, methylprednisolone (Medrol), and dexamethasone (Decadron, Hexadrol). These drugs heavily suppress inflammation but can cause short-term side effects including swelling, increased appetite, and weight gain and long-term side effects including stretch marks on the skin, weakened or damaged bones, high blood pressure, damage to the arteries, diabetes, infections, and cataracts.
When the kidneys or central nervous systems are affected immunosuppressive drugs such as cyclophosphamide (Cytoxan) and mycophenolate mofetil (CellCept) may be used. These drugs restrain the overactive immune system by blocking production of immune cells. Side effects may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The risks increase with the length of treatment.
Sometimes, methotrexate (Folex, Mexate, Rheumatrex), a powerful disease-modifying anti-rheumatic drug, is recommended.
What therapies does Dr. Weil recommend for lupus?
The male hormone DHEA (dehydroepiandrosterone), produced in the adrenals, seems to help and may reduce the need for prednisone. Although DHEA is available over-the-counter, don’t take it without medical supervision. It presents an increased risk of heart attack and breast and prostate cancer so it is vital that a physician monitor anyone taking it for lupus. Furthermore, over-the-counter brands of DHEA may not be as reliable as prescription forms.
Take a good multivitamin/multimineral supplement with recommended dosages of antioxidants. To help address inflammation, increase intake of omega-3 fatty acids by eating sardines or other oily fish (salmon, herring, mackerel) three times a week or supplementing with fish oil. Freshly ground flaxseeds (grind two tablespoons a day and sprinkle over cereals or salads) can also help decrease inflammation. Other dietary strategies include avoiding polyunsaturated vegetable oils (safflower, sunflower, corn, etc.), margarine, vegetable shortening, and all products made with partially hydrogenated oils. Eat a low-protein, plant-based diet that excludes all products made from cows' milk, be sure to eat plenty of fresh fruits and vegetables (with the exception of alfalfa sprouts, which contain the amino acid L-canavanine that can worsen autoimmunity.)
For arthritic symptoms, take a natural anti-inflammatory agent, such as Zyflamend (from New Chapter) containing ginger and turmeric. Get the right kind of regular exercise; swimming or water aerobics are best for those who have arthritis symptoms. Investigate traditional Chinese medicine and Ayurvedic medicine, both of which often do well with autoimmune conditions. Definitely try one or more mind/body therapies, such as hypnosis or interactive guided imagery.
Autoimmune illnesses tend to wax and wane, and full remissions are possible. The mind/body connection is often obvious in the ups and downs of lupus, so take full advantage of it to promote healing. Avoid support groups that focus on symptoms, and any conventional doctor who encourages a hopeless or negative attitude toward managing the disease.
What are the symptoms?Flare-ups of lupus can cause acute inflammation and damage to various body tissues and can affect the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Some of the most common symptoms are painful or swollen joints, unexplained fever, kidney problems and extreme fatigue. A characteristic red skin rash - called a "malar" or "butterfly" rash because it roughly mimics the insect's shape - may appear across the nose and cheeks. Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Because many lupus patients are sensitive to sunlight, skin rashes often develop or worsen after sun exposure.
What are the causes?
What is the conventional treatment?The medical doctors who treat lupus are rheumatologists who specialize in arthritis and other inflammatory disorders. However, depending on the individual, case treatment may involve a wide range of health professionals including clinical immunologists (doctors specializing in immune system disorders), nurses, psychologists, social workers, nephrologists (kidney disease specialists), hematologists (specialists in blood disorders), dermatologists, and neurologists.
Drugs used to treat lupus include nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen, alone or combined with other drugs for pain, swelling, and fever. Drugs that work inside cells, including antimalarial drugs such as hydroxychloroquine (Plaquenil) are used for fatigue, joint pain, skin rashes, and inflammation of the lungs. Continuous treatment with antimalarials may prevent lupus flare up from recurring.
However, the mainstays of treatment are corticosteroids such as prednisone (Deltasone), hydrocortisone, methylprednisolone (Medrol), and dexamethasone (Decadron, Hexadrol). These drugs heavily suppress inflammation but can cause short-term side effects including swelling, increased appetite, and weight gain and long-term side effects including stretch marks on the skin, weakened or damaged bones, high blood pressure, damage to the arteries, diabetes, infections, and cataracts.
When the kidneys or central nervous systems are affected immunosuppressive drugs such as cyclophosphamide (Cytoxan) and mycophenolate mofetil (CellCept) may be used. These drugs restrain the overactive immune system by blocking production of immune cells. Side effects may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The risks increase with the length of treatment.
Sometimes, methotrexate (Folex, Mexate, Rheumatrex), a powerful disease-modifying anti-rheumatic drug, is recommended.
What therapies does Dr. Weil recommend for lupus?
The male hormone DHEA (dehydroepiandrosterone), produced in the adrenals, seems to help and may reduce the need for prednisone. Although DHEA is available over-the-counter, don’t take it without medical supervision. It presents an increased risk of heart attack and breast and prostate cancer so it is vital that a physician monitor anyone taking it for lupus. Furthermore, over-the-counter brands of DHEA may not be as reliable as prescription forms.
Take a good multivitamin/multimineral supplement with recommended dosages of antioxidants. To help address inflammation, increase intake of omega-3 fatty acids by eating sardines or other oily fish (salmon, herring, mackerel) three times a week or supplementing with fish oil. Freshly ground flaxseeds (grind two tablespoons a day and sprinkle over cereals or salads) can also help decrease inflammation. Other dietary strategies include avoiding polyunsaturated vegetable oils (safflower, sunflower, corn, etc.), margarine, vegetable shortening, and all products made with partially hydrogenated oils. Eat a low-protein, plant-based diet that excludes all products made from cows' milk, be sure to eat plenty of fresh fruits and vegetables (with the exception of alfalfa sprouts, which contain the amino acid L-canavanine that can worsen autoimmunity.)
For arthritic symptoms, take a natural anti-inflammatory agent, such as Zyflamend (from New Chapter) containing ginger and turmeric. Get the right kind of regular exercise; swimming or water aerobics are best for those who have arthritis symptoms. Investigate traditional Chinese medicine and Ayurvedic medicine, both of which often do well with autoimmune conditions. Definitely try one or more mind/body therapies, such as hypnosis or interactive guided imagery.
Autoimmune illnesses tend to wax and wane, and full remissions are possible. The mind/body connection is often obvious in the ups and downs of lupus, so take full advantage of it to promote healing. Avoid support groups that focus on symptoms, and any conventional doctor who encourages a hopeless or negative attitude toward managing the disease.
Monday, December 13, 2010
Saturday, December 11, 2010
Saturday, December 4, 2010
Lupus Holiday Stress Busters
For lupus survivors it is always a challenge to engage fully in the holiday festivities surrounding this time of year. Most parties are in the evening which makes it difficult for those who are ready to curl up with a heating pad by 8:00 p.m. and many who have cataracts from steroids. I have a hard time seeing to drive at night. I will not go further than a few miles and stay on roads which I am familiar if driving at night. The light coming at me from other cars makes it difficult to see due to cataracts and early signs of macular degeneration. So then I try to explain to my loved ones early on that brunch and lunch celebrations are much better for me. I actually love brunch. You can sleep in and take your time defrosting your limbs-joints then drive over to a friends for a lazy brunch and home in time for an afternoon nap. Now that is a holiday!
For those who have challenges with finances and the added stress of expectations; I recommend you step out of the stress zone. It took me years and years to jump off the stress train. It hurt at first but then change is never comfortable. People could not quite relate to an email Holiday card or a pre-typed letter. Now everyone send e-cards. Then there is the lack of funds for presents. I began making my gifts years ago and it became so much fun that I plan months in advance by preparing foods, preserving herbal oils and vinegars, making tinctures and smudge sticks, Douglas has made tree decorations and magnets and we usually make our own music CD. These are simple pleasures and easy to make all season long. I store all my gifts and treasures in a closet and collect recycled/re-purposed items for wrapping. I also re-purpose cards FYI. Then when the season appears I do not feel the stress and never have to shop except for stocking stuffers which can be bought at our co-op or health food store. Trader Joes is another great place for little stuffers and food items to fit any budget. FYI this is our time of year to buy new chap stick, deodorant, tooth brushes, socks, underwear, lotions and potions. As a child I used to get frustrated with opening a stocking full of hygiene items and underpants but I now look forward to it. It feels like a fresh start. It truly is a simple life. I find that all I need are the basics and lots of LOVE! is that not what Christmas is all about?
For those who have challenges with finances and the added stress of expectations; I recommend you step out of the stress zone. It took me years and years to jump off the stress train. It hurt at first but then change is never comfortable. People could not quite relate to an email Holiday card or a pre-typed letter. Now everyone send e-cards. Then there is the lack of funds for presents. I began making my gifts years ago and it became so much fun that I plan months in advance by preparing foods, preserving herbal oils and vinegars, making tinctures and smudge sticks, Douglas has made tree decorations and magnets and we usually make our own music CD. These are simple pleasures and easy to make all season long. I store all my gifts and treasures in a closet and collect recycled/re-purposed items for wrapping. I also re-purpose cards FYI. Then when the season appears I do not feel the stress and never have to shop except for stocking stuffers which can be bought at our co-op or health food store. Trader Joes is another great place for little stuffers and food items to fit any budget. FYI this is our time of year to buy new chap stick, deodorant, tooth brushes, socks, underwear, lotions and potions. As a child I used to get frustrated with opening a stocking full of hygiene items and underpants but I now look forward to it. It feels like a fresh start. It truly is a simple life. I find that all I need are the basics and lots of LOVE! is that not what Christmas is all about?
Friday, November 19, 2010
BENLYSTA TRIAL (belimumad) for treating lupus
First new drug for lupus in over 5o years
The ALR is committed to supporting important research that will ultimately lead to a detailed understanding of lupus, as well as hopefully a cure. The ALR is the world’s largest charitable funder of lupus research. One hundred percent of all donations to the organization support innovative medical research programs focused on preventing, treating and curing systemic lupus erythematosus or lupus, as the Board of Directors funds all administrative and fundraising expenses.
Additional Findings from the BENLYSTA™ (belimumab) BLISS-76 Phase III Clinical Trial Announced
April 21, 2010The Alliance for Lupus Research (ALR) is pleased to bring you an update on the clinical trial results recently announced following an analysis of the secondary endpoints of the BLISS-76 study conducted by Human Genome Sciences (HGS) and GlaxoSmithKline (GSK). The BLISS-76 study is the second of two Phase III trials of BENLYSTA™ (belimumab), an investigational lupus drug.
The new analysis, which looked at data at 76-weeks from the initiation of the study, further showcased that BENLYSTA plus standard of care resulted in higher response rates compared with placebo plus standard of care. However, this secondary endpoint did not reach statistical significance. The new data also showcased that BENLYSTA continued to be well-tolerated, and adverse event rates remained comparable between BENLYSTA and placebo treatment groups.
“The complexity of the immune system alterations in patients with lupus will continue to present challenges for scientists who are studying disease mechanisms and for clinical development programs testing new drug candidates,” said Dr. Peggy Crow, Chair of the Scientific Advisory Board of the ALR. “BENLYSTA has well-documented effects on some of the immunologic parameters associated with disease activity, but the drug’s impact on clinical disease will likely be variable from one patient to another.”
BENLYSTA already met its primary efficacy endpoint at 52-weeks in both BLISS-76, as well as in the first of the two pivotal Phase III trials, BLISS-52. These findings were previously announced in the second half of last year. Based on the study findings at 52-weeks, consistent with the study protocol, HGS and GSK are expected to submit marketing applications for regulatory approval in the United States, Europe and other regions in the second quarter of this year. The full presentation of the BLISS-76 trial, including results at 52-weeks and 76-weeks, are expected to be presented at medical meetings later this year.
“The ALR is pleased with the companies’ continued commitment to the BENLYSTA development program,” explains Ken Farber, Acting Executive Director of the ALR. “The findings at 76-weeks from the trial provide a closer look at the benefits of this potential new therapeutic option for people with lupus. Our hope is that this clinical trial, as well as other lupus research underway, will ultimately help doctors in developing new strategies for treating this debilitating disease.”
The ALR will continue to report on new research and milestones surrounding BENLYSTA, as well as other therapeutic lupus research underway.
Advancing Lupus Research for More Than 10 Years
Over the past 10 years, the ALR has advanced pioneering lupus investigations and has achieved great progress in lupus research, including supporting some of the important basic and translational research on the molecule targeted by BENLYSTA, BLyS, also called B cell-activating factor (BAFF). The ALR has funded more than five million dollars in B-cell research.
Monday, November 1, 2010
NYT Lupus Article and chronic illness
New York Times article on Lupus Research
This is an interesting article on lupus with many links to other informative articles and data. I will have to make one correction though. It is widely accepted within the lupus community that there are more than 1.5 million lupus patients in the United States. Some experts believe the number is more like 2.5 million (1 in 170 people) and they say 5 million world wide diagnosed. Because people of color have 3 times the prevalence (Blacks, Native Americans, Asians, Hispanics) and 90% of lupus patients are women; it is likely not all are being diagnosed, treated or included in research studies. Remember a few years back it was discovered that many breast cancer studies were being performed on men? Same goes for past lupus studies. Maybe because men are more likely to take the risk of being study participants or that most researchers in the past were men. Not sure. I do know that ACCURATE numbers are not truly known. The other reason people do not get diagnosed is because it is such a difficult disease to pin down. Some people have told me they had symptoms for 10-20 years before they found out that what they were experiencing was lupus. Almost all lupus patients have arthritis so it can be misdiagnosed as Arthritis alone.The flares can come and go and lab tests can be off especially if it take 6 months to see a specialist. The flare could be gone and lupus in an inactive state by the time a patient is tested. Then there is the fear of losing insurance. Some people with lupus will not allow Dr.'s to test them because they do not want to lose their jobs or insurance. It happened to me years ago so I can understand cause for alarm.Loss of income is a huge factor as well. Who wants to hire someone who will be on and off sick indefinitely? Thank goodness for Americans with Disabilities Act!
In order to make it OK for all lupus patients to be diagnosed and treated we need more public awareness and PR like the ingenious Susan G. komen campaign http://ww5.komen.org/(you see the pink ribbon everywhere and many movie stars and musicians supporting the cause) and more funds to research the disease. Chronic disease, which includes Systemic Lupus, are the leading causes of disability and death in the US as most lupus patients have arthritis, heart involvement, increased obesity levels mainly due to steroid treatments and kidney disease. Bottom line for me is that we need to make aware the seriousness of lupus and the prevalence of the disease in order to save lives.
According to the CDC:
This is an interesting article on lupus with many links to other informative articles and data. I will have to make one correction though. It is widely accepted within the lupus community that there are more than 1.5 million lupus patients in the United States. Some experts believe the number is more like 2.5 million (1 in 170 people) and they say 5 million world wide diagnosed. Because people of color have 3 times the prevalence (Blacks, Native Americans, Asians, Hispanics) and 90% of lupus patients are women; it is likely not all are being diagnosed, treated or included in research studies. Remember a few years back it was discovered that many breast cancer studies were being performed on men? Same goes for past lupus studies. Maybe because men are more likely to take the risk of being study participants or that most researchers in the past were men. Not sure. I do know that ACCURATE numbers are not truly known. The other reason people do not get diagnosed is because it is such a difficult disease to pin down. Some people have told me they had symptoms for 10-20 years before they found out that what they were experiencing was lupus. Almost all lupus patients have arthritis so it can be misdiagnosed as Arthritis alone.The flares can come and go and lab tests can be off especially if it take 6 months to see a specialist. The flare could be gone and lupus in an inactive state by the time a patient is tested. Then there is the fear of losing insurance. Some people with lupus will not allow Dr.'s to test them because they do not want to lose their jobs or insurance. It happened to me years ago so I can understand cause for alarm.Loss of income is a huge factor as well. Who wants to hire someone who will be on and off sick indefinitely? Thank goodness for Americans with Disabilities Act!
In order to make it OK for all lupus patients to be diagnosed and treated we need more public awareness and PR like the ingenious Susan G. komen campaign http://ww5.komen.org/(you see the pink ribbon everywhere and many movie stars and musicians supporting the cause) and more funds to research the disease. Chronic disease, which includes Systemic Lupus, are the leading causes of disability and death in the US as most lupus patients have arthritis, heart involvement, increased obesity levels mainly due to steroid treatments and kidney disease. Bottom line for me is that we need to make aware the seriousness of lupus and the prevalence of the disease in order to save lives.
According to the CDC:
Chronic Diseases are the Leading Causes of Death and Disability in the U.S.
- 7 out of 10 deaths among Americans each year are from chronic diseases. Heart disease, cancer and stroke account for more than 50% of all deaths each year.1
- In 2005, 133 million Americans – almost 1 out of every 2 adults – had at least one chronic illness.2
- Obesity has become a major health concern. 1 in every 3 adults is obese3 and almost 1 in 5 youth between the ages of 6 and 19 is obese (BMI ≥ 95th percentile of the CDC growth chart).4
- About one-fourth of people with chronic conditions have one or more daily activity limitations.5
- Arthritis is the most common cause of disability, with nearly 19 million Americans reporting activity limitations.6
- Diabetes continues to be the leading cause of kidney failure, nontraumatic lower-extremity amputations, and blindness among adults, aged 20-74.7
Wednesday, October 27, 2010
Tuesday, October 19, 2010
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