Living with lupus

Tue, Sep 23rd 2014, 10:17 AM

Due to improvements in treatments for lupus (Systemic lupus erythematosus), people with the condition are living significantly longer, according to Dr. Omala Ablack who said the outlook for any given individual is dependent on the severity of the disease and whether any vital organs are affected. But she said most people with lupus could expect to live a normal -- or near normal -- life span.
Dr. Ablack, an internist who spoke on the topic living with lupus at the recent Doctors Hospital Distinguished Lecture Series said the autoimmune disease in which the body's own immune system, stimulated by triggers in the environment attacks a person's own organs. The body's immune system attacks the tissues and it can have an effect on the skin, the heart, the lungs, the central nervous system, the bones and the joints.
The disease tends to be more active in the first year of diagnosis and in people under the age of 40. It is 10 times more common in The Bahamas. There is no cure for lupus. Treatments and lifestyle changes can help with managing symptoms.
"After high blood pressure and diabetes, lupus is a high cause of kidney failure and patients requiring dialysis in the country," said Dr. Ablack. " And early testing and screening for lupus is important, because the disease can be tricky to diagnose because it does not really have any specific symptoms or presentation. The disease often has to be suspected based on family history, anemia, fever and joint pains that don't get diagnoses as rheumatoid arthritis/infectious arthritis."
According to the doctor when people say they have lupus, they usually mean SLE, but there are other types of lupus that are not as serious as the most common type in which you have multiple organ damage. Cutaneous lupus erythematosus only affects the skin and spares the internal organs; some people will get a drug-induced type of lupus which is temporary. Once the offending drug has been identified and discontinued, the lupus-like symptoms and skin reaction disappear.

Organ involvement
Lupus can affect the brain to the point where the sufferer can get headaches, strokes and seizures. Dr. Ablack said the person often gets psychiatric manifestations, such as confusion, depression, anxiety and personality changes.
While the digestive tract is not very common in lupus, Dr. Ablack said patients may get some abdominal pain, nausea and vomiting. She said the disease may cause abnormal heart rhythms. And will affect a patient's lungs to the point where they may cough up blood and have difficulty breathing.
"Skin lesions in lupus are probably some of the most common things that you see and most times you see the lesions on the face. Some people will get something called Raynaud's phenomenon, which is when you're exposed to stress, whether it be emotional stress or physical stress as in cold temperatures, the fingertips themselves change color and become cold."
One of the biggest complications with the disease that medical professionals worry about is the effect on the kidneys that she said could go undetected for years if the patient is not being evaluated on a regular basis. "Unfortunately, kidney disease can go undetected for many years if the patient is not being evaluated on a regular basis and often patients may only present because they're putting on weight and their legs are starting to swell," she said.
Common sites for the lupus skin rash tend to be along the face, the neck, the chest and the hands. It's often called a Malar rash because of the distribution on the face, over the nose bridge and extending around the cheeks. It can be very mild to severe, from a slight reddish color on the face to being thick, red, and swollen. It can become scarring, leaving deformities on the face. The internist said the disease could also affect the hands, the head and the gums. Some people will present with hair loss which often looks like they are thinning or going bald; this can be an early sign, not only of lupus, but other rheumatological diseases. Sufferers often get mouth ulcers, and the same reddened rash may appear on the face can also affect the tips of the fingers.
Lupus also affects the joints, but the characteristic finding of joint pains in lupus is that unlike rheumatoid arthritis, it's not erosive. Dr. Ablack said the joint pains are often bilateral, affecting left and right at the same time.
The disease affects the kidneys by decreasing their ability to filter the blood by making urine to get rid of the toxins that the body produces daily, and the patient gets kidney failure. Dr. Ablack said patients often complain of gaining weight, swelling in the legs and of their blood pressure escalating. Medical professionals check the urine samples of patients with lupus because they may often have protein in the urine, which is an early indication that the lupus is starting to affect the kidneys. At this point, patients may end up having additional blood tests and even biopsies of the kidney to determine the effects of the lupus on the kidney and the appropriate treatment. She said the reason the tests need to be done early is to prevent kidney failure related to the lupus and prevent the patient having to go on dialysis.
In the brain, lupus patients can get headaches, confusion, psychiatric/personality changes, strokes and seizures.
"Strokes tend to be a big problem with lupus patients in that lupus may be a reason why a young person, someone under the age of 40 comes into hospital presenting for stroke. We don't see stroke in patients under the age of 40 with chronic diseases like high blood pressure and diabetes. So when someone has a stroke at an early age we need to do blood investigations and make sure we're not missing a disease like lupus," she said.

Who can get lupus?
Anyone can get lupus, but it affects women 10 times more often than men. Other than being female, the odds of getting the disease are higher if you are African-American, Latino or Asian; between the ages of 20 and 40 and related to someone with lupus. If you have someone in the family with lupus, there is a likelihood that your risk for getting lupus is higher.
A combination of genetics, family history and environmental things can trigger the autoimmune process that causes the lupus. Triggers include physical stress, emotional stress, sunlight and infections.

Symptoms
Lupus sufferers may have joint pain and the butterfly rash. Some patients complain of photosensitivity, which is the inability to tolerate sunlight (their eyes may burn, the skin may burn and/or the face may be burn); profound fatigue is also a big problem in lupus and one of the symptoms that patients often have difficulties coping with according to the internist. They may also experience fever, hair loss, mouth ulcers and/or anemia. Some people may complain of chest pains and have fluid in the lungs or pleural effusions.

Diagnosing lupus
"Diagnosing lupus can be tricky because there really isn't a specific test that says you have lupus. So in somebody who is suspected to have lupus based on the family history, their presenting complaint, there are certain investigations that you would do that would point you in the direction. One of the first tests that we often do in addition to basic blood tests, checking the hemoglobin, checking the kidney function, checking the liver function includes a test called an ANA (antinuclear antibody test) which more or less tells us if there is a high risk that this patient may have an autoimmune disease. It does not mean there is lupus. It just means that if the patient has a suspicious history of lupus, we do the additional testing to see if it comes back positive for lupus."
Dr. Ablack said not everyone with a positive ANA test will go on to get an autoimmune disease. She said 25 percent of people with positive ANA tests will actually never develop autoimmune disease. A tissue biopsy can also be done.

Treatment
"There isn't a cure for lupus. But in the last 20 years, treatments have changed to the extent that we can really control the symptoms and patients are doing a lot better than they did 20 years ago. The goal of treatment is to control the symptoms so in patients where they have a very mild form of the disease, they can be treated with non-steroidal anti-inflammatory drugs for the joint pains; they can have corticosteroid creams for the rashes on the skin, and sometimes we use a drug called hydroxychloroquine which is a drug used to treat malaria, and works to treat the joint pain in lupus. If the disease is more severe we often put the patients on higher doses of steroids, whether it be in the form of pills or IV injections that they get in the hospital, and then escalate to more potent drugs which are the Cytotoxic drugs that directly attack the immune system and attempt to block cell growth and dampen or suppress the immune system."

Pregnancy and lupus
Dr. Ablack said women with lupus can get pregnant, but the key to a safe pregnancy with lupus is following up with your physician to ensure the lupus is controlled, and the inflammation is at a very low level before becoming pregnant.
"Many women with SLE can get pregnant and deliver a healthy baby. A good outcome is more likely for women who receive treatment and do not have serious heart or kidney problems. However the presence of SLE antibodies raises the risk of miscarriages, so it's important to understand that when you're embarking on pregnancy because it is a high-risk situation that may come with complications."
Dr. Ablack said the recommendation is for women to continue taking their medication during pregnancy as the corticosteroids and hydroxychloroquine have been determined to be safe enough in pregnancy. If they stop their medications, the lupus could flare and worsen significantly in pregnancy. The immunosuppressive drugs are contraindicated in pregnancy.

Coping and support in lupus
"Lupus is a chronic disease, so just like diabetes, just like high blood pressure, it is a chronic illness that the patient will have to learn to cope with for the rest of their lives. Patients with lupus will go through periods where the disease flares up, you treat them, it settles down, they do better and as different things happen in life -- stressful events, exposure to sunlight, infections, it tends to worsen the lupus or can cause a flare. If you have SLE it is also important to get preventive heart care, because people with lupus have a very high risk for heart disease compared to people without lupus," she said.
Lupus is an inflammatory process and the inflammatory process increases the risk for atherosclerosis, which is why people who have lupus have a higher incidence of stroke and heart attack. The doctor said it's important to be screened and to be managed for atherosclerosis to prevent these complications. She also said staying up to date with immunizations, and most especially with the flu shot is important. People with lupus over age 65 also have to be checked for osteoporosis because of their medication, which may cause bone thinning.
She also said women need to be very careful in menopause with the use of hormone replacement therapy (HRT), because the HRT can often cause lupus flare-ups. Women who require contraception also need to be careful with oral contraception the pill can also trigger a lupus flare-up.
"We are not certain why, however we do know that lupus is more common in women, so there is some belief that the estrogen that women make often trigger the lupus symptoms which is why you see the effect with HRT and oral contraceptives," said Dr. Ablack.

Self-care for lupus
To help reduce the flare-ups the doctor encourages people with lupus to cover up when going out in the sun -- wearing sunglasses and sunscreen with an SPF of 55 is recommended, along with wearing hats, long-sleeved clothing and long pants. Lupus patients should not smoke, as smoking can trigger flare-ups.
She encouraged regular exercise to decrease lupus flare-ups, and help patients cope with the fatigue of lupus. She said they should also improve their stress management skills and get plenty of rest; people who get up to 12 hours of sleep a night do much better in preventing their lupus flare-ups and dealing with the fatigue than those who rest less.

Lupus and mental illness
"Because lupus is a chronic disease, and patients often have to find ways to cope on a daily basis, patients with lupus often have a lot of depression and anxiety. This may be the result of the condition's effect on the nervous system combined with the emotional strain of coping with a chronic illness. It may also require additional treatment and it's important to ask your physician to recognize that it may be beneficial to refer you to a psychiatrist for further care," said Dr. Ablack.

Click here to read more at The Nassau Guardian

 Sponsored Ads