Monday, October 5, 2015

Two Choices When Faced With A Lupus Diagnosis

There are times in each of our lives when we are faced with diversity and challenges that seem to much to carry. That is when one has a huge decision to make: First choice could be to allow the weight to bury yourself in self pity, grief, fear, shame, anger and resentment. Second choice is to life yourself up after you have a full out screaming, crying, stomping episode in the privacy of your own home or in your car, out in the woods (someplace safe where no one will here or see you) then accept what you have been given and move forward with strength, courage, grace and dignity. You will slip sometimes. Cry it out. Find a friend who can listen and one who is not judgmental, but don't burn out that friend. Find a support group and or a counselor and stay with it. There are resources available in very community for help. Call social services in your county and ask for a chronic illness specialist. Ask your Dr. if there are groups or services available to you. If you belong to a church you might ask your pastor or priest or monk for help. Some churches have all sorts of support groups for grief. I even went to a cancer support group and found that lupus and cancer patients face similar issues, if not the same. There may be a respite or retreat close by at a convent or related to a church retreat where they allow anyone to stay for limited charge or free.

I think that once one makes the choice to follow an empowered path all the resources become clear. That is being your own best advocate. No one will do this for you. You can not expect others to understand or be there for you to process 100% of the time, nor can your family or friends expect you to be strong all the time. Having a support outside if your core group of friends-family is best for everyone. So get out there and find those who you can share your deepest feelings and who will offer you real steps in finding peace and empowerment in your life. You may have lupus but lupus does not have you.

Angela Madaras

Wednesday, March 23, 2011

Pretty Disabled Clothing Company

Pretty Disabled Clothing Company Home Page

Pretty Disabled Clothing Launch Celebration

Saturday, April 2, 6-9pm
Virgil H. Carr Cultural Arts Center
311 E. Grand River
Detroit, Mi 48226
Bring a canned good to support a local soup kitchen
Light refreshments and entertainment

 

Look for us in the March issue of 

BLAC Magazine
www.BLACDetroit.com

Monday, March 14, 2011

New Treatment For Lupus..First in 50 years

FDA approves Benlysta to treat lupus

First new lupus drug approved in 56 years

The U.S. Food and Drug Administration today approved Benlysta (belimumab) to treat patients with active, autoantibody-positive lupus (systemic lupus erythematosus) who are receiving standard therapy, including corticosteroids, antimalarials, immunosuppressives, and nonsteroidal anti-inflammatory drugs.

Benlysta is delivered directly into a vein (intravenous infusion) and is the first inhibitor designed to target B-lymphocyte stimulator (BLyS) protein, which may reduce the number of abnormal B cells thought to be a problem in lupus.

Prior to Benlysta, FDA last approved drugs to treat lupus, Plaquenil (hydroxychloroquine) and corticosteroids, in 1955. Aspirin was approved to treat lupus in 1948.

Lupus is a serious, potentially fatal, autoimmune disease that attacks healthy tissues. It disproportionately affects women, and usually develops between ages 15 and 44. The disease affects many parts of the body including the joints, the skin, kidneys, lungs, heart, and the brain. When common lupus symptoms appear (flare) they can present as swelling in the joints or joint pain, light sensitivity, fever, chest pain, hair loss, and fatigue.

Estimates vary on the number of lupus sufferers in the United States ranging from approximately 300,000 to 1.5 million people. People of all races can have the disease; however, African American women have a 3 times higher incidence (number of new cases) than Caucasian women.

“Benlysta, when used with existing therapies, may be an important new treatment approach for health care professionals and patients looking to help manage symptoms associated with this disease,” said Curtis Rosebraugh, M.D., M.P.H., director of the Office of Drug Evaluation II in the FDA’s Center for Drug Evaluation and Research.

Two clinical studies involving 1,684 patients with lupus demonstrated the safety and effectiveness of Benlysta. The studies diagnosed patients with active lupus and randomized them to receive Benlysta plus standard therapy, or an inactive infused solution (placebo) plus standard therapy. The studies excluded patients who had received prior B-cell targeted therapy or intravenous cyclophosphamide, and those who had active lupus involving the kidneys or central nervous system.

Patients treated with Benlysta and standard therapies experienced less disease activity than those who received a placebo and standard of care medicines. Results suggested, but did not definitively establish, that some patients had a reduced likelihood of severe flares, and some reduced their steroid doses.

African American patients and patients of African heritage participating in the two studies did not appear to respond to treatment with Benlysta. The studies lacked sufficient numbers to establish a definite conclusion. To address this concern, the sponsor has agreed to conduct an additional study of people with those backgrounds to further evaluate the safety and effectiveness of Benlysta for this subgroup of lupus patients.

Those receiving Benlysta during clinical studies reported more deaths and serious infections compared with placebo. The drug should not be administered with live vaccines. The manufacturer is required to provide a Medication Guide to inform patients of the risks associated with Benlysta.

The most common side effects in the studies included nausea, diarrhea, and fever (pyrexia). Patients also commonly experienced infusion reactions, so pre-treatment with an antihistamine should be considered.

Human Genome Sciences Inc., based in Rockville, Md., developed Benlysta and will co-market the drug in the United States with GlaxoSmithKline of Philadelphia.

Monday, December 20, 2010

Quote from Albert Einstein: "The only reason for time is so that everything doesn't happen at once."

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.

Tuesday, December 14, 2010

Lupus according to Dr. Andrew Weil

Lupus according to Dr. Weil
lupus woman inside
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.