Tuesday, September 18, 2012
In this day and age, the diagnosis of an illness such as lupus is not a death sentence. In fact, it is far from it. Most people with lupus have to adjust their lifestyles in some way but can expect to enjoy an almost normal life.
The key to living a good life with lupus is knowing about the condition, understanding what your limitations are and making the absolute most of what you have. So read on, learn about the condition and if there is anything you are unsure about, ask your doctor or contact your closest lupus organisation.
- What is Lupus?
- What causes Lupus?
- Who is most often affected?
- Are all cases of Lupus the same?
- The signs and symptoms of Lupus
- How does Lupus affect the body?
- Diagnosing Lupus
- Laboratory tests
- Treating Lupus
- Lupus in different groups
- Tips for living with lupus - Help yourself to a full life
- Commonly asked questions
- Where can I go for further information and support
- The history of Lupus
What is Lupus?
Lupus is an autoimmune disease. A normal healthy immune system recognises and destroys foreign objects like bacteria and viruses. With autoimmune diseases, however, the immune system starts to attack objects that are not foreign. Hence the term "auto" (self) "immune."
With lupus, the immune system produces an excess of proteins called antibodies that attach themselves to various structures in the body. The accumulation of these antibodies in the tissues can cause inflammation, damage and pain
What causes Lupus?
Despite many years of research, the cause of lupus is still not known. Scientists believe there are several things that may trigger the formation of the antibodies, including genetic, hormonal and environmental factors. Some of the possible triggers include:
- Hormones (females between the age of 15 and 45 are most commonly affected)
- Certain medications
- Dietary factors
- Viruses and bacteria
- Exposure to UV light
Who is most often affected?
Although lupus can affect anybody, 90% of lupus patients are women. Of these, 90% develop the condition during their reproductive years.
Lupus affects people the world over, although there is a higher incidence in certain regions of the world and in certain ethnic groups. For example, in the United States, African Americans, Latinos and Asians are more commonly affected than Caucasians. Lupus is more common in the Philippines and China than in Japan.
Are all cases of Lupus the same?
There are two main types of lupus:
- Systemic lupus erythematosus (SLE) – almost any organ or system of the body can be affected in this form of lupus. In most patients, only the skin and joints are affected (this is called minor organ threatening lupus). In others, SLE also affects the kidneys, lungs, heart, blood vessels and/or brain (this is major organ-threatening lupus).
- Discoid lupus (also known as chronic cutaneous lupus erythematosus) – usually appears as a red scaly rash on sun-exposed areas such as the face, scalp, arms, legs or trunk. Discoid lupus is generally a milder disease than SLE. It is usually diagnosed by its appearance and by skin biopsy. A small number of people with discoid lupus will develop SLE. However, most patients with discoid lupus have their condition confined to the skin only.
Other milder forms of lupus sometimes occur. In subacute cutaneous lupus, skin rashes, sun sensitivity and joint aches are the main symptoms.
Drug-induced lupus is usually a transient form that develops as a reaction to certain medications. It clears up when the medications are ceased.
The signs and symptoms of Lupus
Lupus is a very variable condition. While it has many characteristic symptoms, most patients will never experience all of them. Similarly, no two patients experience identical symptoms.
The severity of the disease also varies. In some patients symptoms appear suddenly and are relatively severe, while in others the disease remains at a low level for several years before diagnosis. For most patients, however, the frightening descriptions of life-threatening disease in medical textbooks never occur, and the condition remains mild and readily manageable.
Lupus runs an unpredictable course. For some people, symptoms subside after treatment of the initial acute attack. For others, periods of "remission" are punctuated by brief "flare-ups" of disease.
Several symptoms are seen in the initial stages of lupus. These include:
- Fatigue, weakness and lethargy
- Joint pain or swelling (experienced by about half of patients)
- Skin rashes (around one in five patients)
How does Lupus affect the body?
Lupus can affect many parts of the body. The most common symptoms are described below. In addition, most patients feel tired or weak.
Skin Almost any type of skin rash may occur with lupus, affecting around two-thirds of patients. The characteristic lupus "butterfly" rash of the cheeks and nose is seen in about one-third of patients, while one in five patients experience mouth sores. Hives and altered skin colour (a lightening or darkening of the skin in places) can also occur. One-third of patients experience Raynaud’s phenomenon, where their fingers turn white then bluish on exposure to stress, cold or vibration.
Joints Joint pain (also known as arthralgia) and inflammation (arthritis) are common features of lupus. Nine out of 10 patients experience some form of joint pain, most commonly occurring in the hands, wrists and feet. Joint pain - which is often accompanied by stiffness and/or swelling - is most severe in the morning and eases later in the day.
Hair During active disease, significant hair loss, or alopecia, can occur. Usually the loss is only temporary and can be treated with a variety of remedies. Certain lupus medications, such as anti-malarial drugs and corticosteroids, may encourage hair growth.
Tendons When tendons are inflamed, they can tighten, causing fingers to pull into abnormal positions such as "trigger fingers". This is, however, an unusual problem.
Muscles Muscle ache, known technically as myalgia, may occur in up to two-thirds of patients. The muscles between the elbow and neck, the knee and hip are most frequently involved. Muscle inflammation or swelling is less common, but requires treatment, as unlike myalgia, it can lead to permanent muscle weakness.
Lungs A thin lining called the pleura surrounds the lungs. Inflammation of this lining is called pleuritis, a condition that affects around one-half of lupus patients at some stage during their life. This causes chest pain when deep breaths are taken.
Heart Inflammation of the sac surrounding the heart, the pericardium, is called pericarditis and affects about a quarter of those with lupus. The main symptom of pericarditis is chest pain below the breastbone that is often relieved by bending forward.
Kidney A condition called lupus nephritis sometimes develops when the delicate filtering mechanisms of the kidney, the nephrons, become inflamed.
Blood Lupus can affect the cells of the blood system and the components of the system that are involved in blood clotting. The most common complaint is anaemia, or too few red blood cells in the bloodstream. As red blood cells carry oxygen to tissues, patients with anaemia will often feel tired. Drops in the levels of white blood cells (defenders against infection) and platelets (which help the blood to clot) are also seen in some patients.
Immune system A condition known as lymphadenopathy, or swollen lymph nodes (most people know lymph nodes as "glands") can sometimes occur.
Brain and nervous system Inflammation of the blood vessels of the brain can cause a variety of symptoms, including depression, seizures and visual disturbances.
Lupus is not an easy condition to diagnose. Symptoms are often similar to other illnesses and tend to come and go. Diagnosis is usually made on the basis of clinical symptoms and on the presence of certain antibodies in the blood. There are 11 symptoms or signs that help distinguish SLE from other conditions. Four or more of the symptoms described in the table below, not necessarily occurring at the same time, indicate SLE.
Symptoms that indicate SLE
Malar rash Rash over the cheeks
Discoid rash Scaly red or raised rash
Photosensitivity Reaction to sunlight – skin rashes that develop or become worse on exposure to sunlight
Ulcers Nose or mouth ulcers
Arthritis Inflammation of two or more joints, but the inflammation does not damage the joint
Serositis Inflammation of the lining of the heart or lungs
Renal disorder Excess protein or cells in the urine
Neurological disorder Seizures and/or abnormal behaviour when there are no other likely causes
Haematological disorder Lower numbers of red or white blood cells or blood platelets (these disorders are known as anaemia, leukopenia and thrombocytopenia, respectively)
Immunological disorder Testing positive in laboratory tests for one or more antibodies that are distinctive of lupus (eg anti-DNA antibodies, anti-phospholipid antibodies, anti-Sm)
Anti-nuclear antibody Testing positive in laboratory tests for a protein known as the "anti-nuclear antibody", a protein indicative of lupus.
A doctor will carry out a number of laboratory tests to help diagnose lupus. These include blood and urine tests (looking for urinary protein and red blood cells).
In the anti-nuclear antibody (ANA) test a sample of blood is taken and tested to see if it has anti-nuclear antibodies – antibodies that react against the nucleus of human cells.
While a positive ANA test points to lupus (virtually all people with SLE test positive), it is not diagnostic of lupus. A positive ANA test is seen in several other conditions, such as rheumatoid arthritis and some viral diseases. Sometimes even perfectly healthy people will be positive for ANA. If the ANA test is positive, the doctor will take into account whether the patient has other symptoms of lupus before diagnosing the condition. ANA-negative lupus is rare but not unheard of – patients in this situation will usually undergo more tests before their lupus is confirmed.
The anti-deoxyribonucleic acid (DNA) antibody test is similar to the ANA test. In this test, the antibodies tested for are those that react against DNA, the genetic material contained in the nucleus of human cells. It is more specific for lupus than the ANA test, as only rarely do people with other conditions test positive for anti-DNA antibodies. The drawback of this test is that the antibodies are only found in two-thirds of lupus patients.
Further blood tests may be carried out to see whether the levels of complement proteins in the blood are lowered. The presence of anti-Sm (sometimes called the extractable nuclear antigen or ENA) is also diagnostic of lupus.
The aim of treating lupus is to reduce inflammation in tissues and bring under control the abnormalities in the immune system that cause the inflammation. Treatment also enables the patient to live a fuller life. As no two patients are alike, treatment is tailored to the individual, taking account of the severity of the disease and the organs involved. There are four main groups of drugs used to treat lupus.
- Non-steroidal anti-inflammatory drugs
Used for pain relief and inflammatory conditions such as rheumatoid arthritis, NSAIDs are very useful for many lupus patients, Aspirin, ibuprofen and naproxin are examples of commonly used non-steroidal anti-inflammatory drugs (NSAIDs).
These drugs vary in their effectiveness a drug that one patient finds very effective may be of little or no use to another. This means several NSAIDs may have to be tried before a suitable one is found.
NSAIDs are used to relieve the fevers, headaches, muscle aches, malaise and arthritis that can accompany lupus. However, they are not disease-modifying drugs – they will not put lupus into remission or alter the underlying immune process.
The main side effect of NSAIDs is stomach irritation that can lead to ulcers. A new class of medications related to traditional NSAIDs, called COX-2 inhibitors, reduces this particular side effect.
- Anti-malarial drugs
You may well ask what malaria has to do with lupus? Nothing as it happens, except that many years ago it was fortuitously discovered that anti-malarial drugs reduced lupus symptoms in soldiers at war. Since then anti-malarial drugs have been used widely to treat lupus.
These drugs are particularly effective when the skin and joints are involved.
Two anti-malarial drugs are used in Australia to treat lupus – hydroxychloroquine and chloroquine.
Anti-malarial drugs such as hydroxychloroquine help bring lupus under control in many body systems. Skin rashes, mouth ulcers and hair loss improve in the majority of patients. Joint swelling and aching decreases.
Anti-malarial drugs have few side effects, although it may take several weeks before they start working. The most common side effect is nausea.
It is recommended that patients have their eyes examined every six months, as anti-malarial drugs, and in particular chloroquine, sometimes damage the eye.
Corticosteroids are hormones, now produced synthetically, that have very similar effects to the steroids produced by our bodies. At their naturally low levels, they control a number of processes in our body. When used medicinally at higher doses, corticosteroids dampen inflammation and are very effective at relieving the symptoms of active lupus.
The dose of corticosteroids must be regulated to maximise benefit and minimise side effects. For patients with severe disease, they are the drugs of choice and are given at high doses. Moderate doses are taken during severe flare-ups of non-major organ-threatening disease. Patients with chronic, mild lupus receive low doses and are usually switched to another disease-modifying therapy that has fewer side effects.
At moderate to high doses, taken for weeks to months, corticosteroids can cause a variety of unwanted side effects such as heart palpitations, agitation, weight gain, changes in facial appearance, rapid heart rate and sleeplessness. Side effects from long term therapy (over a period of months to years) are more serious and include raised blood pressure, diabetes, increased risk of infection, and osteoporosis. Over time, corticosteroid doses can be reduced, but patients need to be "weaned" off the drug so that their own body can learn to produce the substance again. Prednisolone is an example of a commonly used corticosteroid.
As their name suggests, immunosuppressants suppress or dampen the immune system. In a disease that is caused by an over-active immune system, they are a logical and very effective choice. Commonly used immunosuppressants are cyclophosphamide and methotrexate.
Immunosuppressants can have serious side effects and for this reason they are usually reserved for severe cases of lupus. They are generally used when serious major organ-threatening disease is present and steroids alone are not enough to control the disease. They are also used when patients cannot tolerate high doses of steroids. For this reason, they are often referred to as "steroid-sparing agents", as they spare the patient the potentially toxic effects of long term steroid treatment.
Patients receiving immunosuppressants are monitored closely for such side effects as anaemia, lowered white blood cell counts and hair loss. They are also at an increased risk of infection and possibly cancer.
In this day and age, with early detection and effective treatment the prognosis for lupus patients is not one of doom and gloom. The prognosis depends on a lot of things, and varies from patient to patient.
Most patients with milder forms of lupus can expect to live a normal life span. This includes subacute cutaneous lupus and SLE that is not major organ-threatening. For major organ-threatening lupus, life expectancy depends on the patient’s race, where they live (and whether they have access to good medical care), their age, their genes, and most of all how severe the disease is. Lupus is fatal in only a small percentage of cases.
- Lupus flares
Many patients experience lupus "flares" – periods where the symptoms of lupus return. Unfortunately, there is no way of knowing how long such flares will last or how severe they will be.
What triggers these flares is not entirely clear, and probably differs from person to person. Almost universally, however, emotional and lifestyle-related stresses are found to have at least some role in lupus flares. Sunlight, an infection, certain medications or even pregnancy may cause disease flares in some people. During these times it is particularly important that patients take good care of themselves.
- Lupus and pregnancy
As most women affected by lupus are of child-bearing age, it is natural that they will question whether they can become pregnant and successfully give birth to a healthy baby. The good news is that in the majority of cases, there is no reason why a woman with lupus cannot have children.
Before considering pregnancy it is important that patients talk to their doctor and are informed of any potential risks for themselves and the baby. It is preferable for lupus to be in remission and to ensure that any medication being taken will not adversely affect the pregnancy.
Lupus does not usually lower fertility, but sometimes women with lupus may have an antibody in their blood that increases the risk of miscarriage. Any woman with a history of more than two unexplained miscarriages should be tested for this antibody (the "anticardiolipin antibody"), as treatments to enable a successful pregnancy are available.
Q & A
Will lupus flare up during pregnancy or after the birth? Whether or not lupus will flare up during pregnancy cannot be predicted. However, lupus flares during pregnancy are far less likely if the illness has been quiet for the six months leading up to conception. If it does flare, it is likely to be mild and in the first trimester. After this, the foetus begins to produce hormones of its own that can help to keep the mother’s disease under control.
In the first weeks after birth new mothers may experience lupus flares but this can be controlled with corticosteroids.
Will lupus medications harm the foetus? Many medications are harmful to a developing foetus. Corticosteroids, however, are safe medications to use during pregnancy.
Will the baby be affected by lupus? A very small number of babies are born with what is known as "neonatal lupus". This is a type of lupus that is only seen when they are first born and does not persist past infancy. Whether or not a baby will develop this condition depends on whether the mother has certain antibodies in her bloodstream – if she does not, there is no risk. If she does, the risk is low but she will need to be monitored more closely during the pregnancy. In most babies neonatal lupus will clear up independently but in some it will require medical intervention.
Can babies be breast-fed? Babies can be breast-fed, although it is advisable to switch to formula three months after the birth. A breast-feeding mother cannot take most lupus medications because of the possibility they may harm the baby. The longer she breast-feeds the longer she is at risk of experiencing a disease flare.
Are my children at increased risk of lupus? While genetic factors play a role in increasing the risk of developing lupus, this illness is only "passed on" to 5-10% of successive generations. This highlights the fact that while genes are important, they do not fully explain why lupus appears in a certain individual and whether or not your children will develop lupus.
Lupus in different groups
Although lupus is most common in young women, it is not unheard of in children. Most children are diagnosed around puberty, although there are rare cases in children younger than 5 years.
Symptoms in childhood lupus are very similar to adult lupus although they are usually more serious. For this reason, children are generally given more aggressive treatment that aims to control the disease before it involves major organs.
Lupus is much more rare in men than women (occurring at a rate of approximately one man for every nine women) but does occur. Unlike women, who tend to develop the disease between the ages of 15 and 45 years, there is no distinct "risk period" where men are more likely to present with lupus. Men tend to experience slightly different symptoms that are often more severe than in women.
Older age groups
Few people develop lupus in old age and it is generally a much milder disease. Those who have had lupus for some time will usually find that their lupus calms down, with only a few symptoms such as photosensitivity and joint pain persisting.
Tips for living with lupus - Help yourself to a full life
Just because you have lupus does not mean you should stop living your life. Do your best to remain on top of the disease – a bit of careful planning and thought will go a long way.
Some tips for staying on top of lupus:
Make sure you get plenty of rest.
Make an effort to do some exercise this will help prevent muscle weakness and fatigue – but don’t overdo it.
Listen to your body if you feel fatigued, take a rest. This may mean taking daytime naps or restructuring your schedule.
Try to avoid becoming anxious or stressed, if you can’t avoid stressful situations, learn how to de-stress. Try yoga, meditation, walking, a relaxing bath or talk to your family, friends or support group about your anxiety.
Remember the sun can trigger flare-ups avoid excessive exposure to the sun and always cover up. Use maximum strength sunblock that protects against UVA and UVB rays
Avoid contact with people who have an infection potential sources of infection such as large crowds (buses, trains and concerts), children and babies.
Find out as much about lupus as you can this will help take away the fear of the unknown
Eat well from each food group if you are on a special diet, make sure you stick to it. Your doctor is trying to help you – so follow his or her instructions and advice.
Keep a list of your symptoms and any questions you might have for your doctor.
Always keep a record of your medications. inform your doctor regularly
Always take your medications as you have been instructed.
Visit your doctor regularly particularly if you feel as though the disease may be flaring up.
Certain things can trigger lupus see if you can work out common triggers for your symptoms. That way you can avoid them next time.
Do not smoking smoking will lower your health so try to quit
Do not over-exert yourself physically or emotionally.
You are not alone there are many other people in your situation. A support group is only a phone call away.
Commonly asked questions
Q & A
Why me? It is a good question and one that many people will ask. The short answer is – we don’t know. Scientists are working hard to find out why some people develop lupus while others do not. The answer may be the key to warding off the disease before it takes hold.
Is lupus genetic? There is good evidence that genetics play a role in deciding who will develop lupus. But just how large a role that is differs from person to person. Some people are more susceptible, genetically, to developing the disease. Whether or not they actually develop lupus may depend on their lifestyle or which viruses or medications they come into contact with.
Can other people ‘catch’ my lupus? Lupus is NOT infectious. There is no need for you to quarantine yourself.
Can I take oral contraceptives (the pill)? You will need to discuss this with your doctor, but in many women with lupus, oral contraceptives can be used without problems.
Do certain things trigger lupus flares? While there are no universally accepted triggers, you may find that sun exposure, certain foods, medications or activities affect your condition. Emotional stress is commonly implicated in lupus flares. It may be useful to keep a note of the things you did or ate prior to a lupus flare – this may help you to identify any triggers.
Am I going to have lupus for life? At present there is no "cure" for lupus, but there is effective medication that will bring the disease under control – often permanently. As you grow older, it is likely that the disease will settle down.
Is there a special diet I should follow? No, but you should eat a healthy, nutritious and well-balanced diet and try to maintain ideal body weight. If you know that a particular food triggers your lupus, it is obviously wise to avoid it.
Where can I go for further information and support
If you have any questions about lupus or your medication, you should ask your doctor. In addition, there are a number of lupus associations and support groups across Australia that can provide invaluable help to lupus patients.
These organisations provide support and information to patients and their families, as well as promote understanding and awareness of the condition in the community. Further research and development in lupus and its treatment is funded by the efforts of these organisations.
The history of Lupus
- Lupus through the ages
Lupus was first described way back in the time of Hippocrates in Ancient Greece.
- The history of lupus
"Lupus" means "wolf" in Latin. There are at least two explanations why the word "lupus" was chosen to describe the disease we now know as systemic lupus erythematosus.
One explanation is that lupus was so named because the common butterfly rash seen on the cheeks and nose of many lupus patients is similar to the facial markings of a wolf. An alternative explanation relates to the early use of the word "lupus" to describe skin ulcers. In the sixteenth century, certain skin ulcers were compared to a hungry wolf eating the sufferer’s flesh.
In the 1800s doctors named another disease involving skin lesions "lupus erythematosus". These lesions were not ulcers but rather were red regions where the skin was thinner than normal.
When doctors discovered that a bacterium was responsible for many of the skin ulcers that were called lupus and that these ulcers cleared up with antibiotic treatment, they realised that lupus erythematosus was a separate condition. It was not until 1872 that doctors realised lupus erythematosus affected parts of the body other than the skin. The condition was given the name lupus erythematosus disseminatus, and the first of the symptoms were documented.
Proudly sponsored by an educational grant from Sanofi-Synthelabo
Friday, September 14, 2012
The benefits of dandelion, the common weed known as Taraxacum officinale, are wide. From the prevention of breast cancer to the help of eczema-like skin problems, this common weed is a miracle plant that shouldn't be ignored.
Dandelions pop up in lawns and fields throughout the world. They are everywhere! Children the world round have spent many an hour blowing the seed heads and counting the puffs to determine the time. However, due to its medicinal properties the dandelion is not seen as a weed to get rid of but rather a herb to cultivate. It is cultivated in China, France and Germany.
Dandelions are interesting plants. Their yellow flowers close up tight when rain is soon to fall and there are a number of variations in leaf characteristics. Some are darker green and slightly furry, with rounded serrations, some are brilliant green, less hardy in hot weather, with sharply-indented longer leaves, but all have the same medicinal value.
In Italy and other European countries well know the benefits of dandelions, and you will see women bent in the fields in spring picking the tender dandelions for salads. And for those growing this herb for herbal medicines the plant is harvested for dandelion tea and tinctures in the early summer before the plant blooms.
Dandelion leaves are used as a powerful diuretic. The root is also used, and usually harvested after 2 years of growth. The root is a blood purifier and helps both the kidneys and the liver to remove poisons from the system. For centuries, dandelion root has been used to treat jaundice.
The common dandelion contains a number of vitamins and minerals essential for maintaining good health. They contain calcium salts, manganese, sodium, sulphur, vitamins A, B, C, D, and that necessary liver-regulating substance, choline.
Benefits of Dandelion and Anemia
Dandelions are a rich source of iron and vitamins, and when compared to carrots, has more carotene than carrots when comparing portions. Dandelions also contain high levels of potassium. For generations, herbalists have used dandelion root to treat anemia to as it has a high iron and zinc content and is rich in vitamins.
Benefits of Dandelion and Bladder Infections and Premenstrual Syndrom (PMS)
Dandelion is a very different diuretic. Most diuretics cause a loss of potassium. Dandelion leaves, however, are rich in potassium therefore, when using dandelion as a diuretic this results in a net gain of this vital mineral. Because of its high potassium levels, dandelion also alleviates leg cramps and muscle spasms. Due to its diuretic properties dandelion helps to relieve fluid retension in premenstrual syndrom (PMS) and counteracts urine retention in bladder infections.
Benefits of Dandelion for Constipation, Hemorrhoids, and Indigestion
Dandelion root is used as a liver cleanser as it stimulates the production of bile which in turn transports potentially noxious compounds to the stool. The increase of bile aids in the relief of constipation without causing diarrhea, and in turn helps with hemorrhoids. If you have gallstones it is advisable not to take dandelion as the increase of bile flow could increase pressure against the stones.
Benefits of Dandelion for Irritable Bowel Syndrome (IBS)
Using dandelion along with 4 other herbs in combination were found in a Bulgarian study to help 95% of the sufferers with the relief of IBS after just 15 days of treatment.
Benefits of Dandelion for Osteoporosis
Dandelion is a rich source of boron, which helps to raise the estrogen levels in the blood, and in turn helps to preserve bone. It is also a rich source of calcium and a fair source of silicon, which some studies suggest helps strengthen bone.
Benefits of Dandelion for Losing Weight
European herbalists frequently suggest dandelion tinctures for losing weight. Many people look fatter than they are through water-retention. As dandelion root is a diuretic is reduces water weight. As it cleanses the liver and stimulates the rate of bile flow, it also helps to improve the fat metabolism in the body.
Benefits of Dandelion and Dandelion Coffee
Dandelion coffee is made from the roots of the plant. They are dug up in the second year of growth, and roasted.
Dig up the whole plant in the autumn. Cut off the leaves, and use in salads, or put through the juicer, or add to the compost heap where they are always very welcome. Then wash and dry the large tap roots (rubbing off the small hair rootlets), and dry in a cool oven till quite brittle. Roast them to a light brown when needed and grind as coffee.
One or two teaspoons brews a cup of a very pleasant tasting dandelion coffee.
Dandelion beer is another option. Pull up one pound weight of leaves and tap roots of the dandelions. Wash well, add rind and juice of 2 lemons, then add 2 gallons of water. Boil for 15 minutes. Strain the liquid over 2 lb raw sugar, add 2 oz cream of tartar, and half an envelope of lager yeast. (You can use 3/4 fresh yeast cake but the taste is not as good. ) Let the liquid stand in stainless steel or ceramic bowls for 3 days, covering lightly. Never use aluminum vessels for making herb beers.
Bottle in brown or dark green bottles, cork well and it will be ready to drink in a week. However, it tastes better after leaving it for two. It has a bitter taste to it, but it is very refreshing on a hot summer's day, and also very good for you in the process.
Use Dandelion with Care
If you are thinking about cultivating dandelions be careful where you grow them. Dandelions expel ethylene gas. As ethylene inhibits the growth and height of nearby growing plants, you will need to place your dandelions well away from the other plants you are cultivating.
However, you can also use this to your advantage. As ethylene is also used extensively in the artificial ripening of fruit, planting dandelions in your orchard will help aid in the early ripening of your fruit crop.
Although it is obvious that there are lots of benefits of dandelion use there are also some precautions to take.
Dandelion may increase stomach acidity and ulcer pain. If you have gallstones or biliary tract obstructions, you should not take this herb. People with known allergies to yarrow and chamomile should use dandelion with caution.
Never use dandelion as a substitute for pharmaceutical drugs for hypertension. If you are taking diuretic drugs, insulin, or medications that reduce blood-sugar levels, you should use dandelion only under a physician's supervision.
Hugs and Blessings Jayde
Friday, August 17, 2012
It is believed that lupus affects people between the ages of 18 and 35 onwards, however children can also be a victim of this disease..
THE FOLLOWING IS A MEDICAL GUIDE ABOUT CHILDHOOD LUPUS....
THERE IS A LOT OF INFORMATION ON ADULT LUPUS, BUT NOT SO MUCH ABOUT CHILDHOOD FORM...............
I WAS BORN WITH LUPUS BUT IT IS NOT VERY COMMON TO BE BORN WITH THE DISEASE... USUALLY IT IS ONSET IN THE LATTER TEENS......
Thomas J. A. Lehman M.D., F.A.A.P., F.A.C.R.
Chief, Division of Pediatric Rheumatology,
Hospital for Special Surgery, New York
Professor of Pediatrics,
Weill Medical College of Cornell University
Caring for a child with lupus is one of the greatest challenges a family can face. After the diagnosis, the first step for every parent is to learn as much as possible about the disease and the special needs of a child with lupus.
Parents will need to educate the child with lupus and their other children as well as their child's teachers, and family friends. This article will address some of the medical considerations of which the family must be aware. It also will address the social and psychological concerns which can have a major impact on the outcome for children with lupus and their families.
Is lupus the same in children and adults?
At one time lupus was thought to be more severe in children than in adults, but most physicians no longer believe this. It is true that children diagnosed with lupus often have been ill for a longer period and are more likely to have significant internal organ involvement, than most adults with lupus. This may be because many children are not recognized as having early lupus until the disease has become worse. As a result children with lupus often are required to begin aggressive therapy soon after diagnosis.
The first step for every family is to be sure the diagnosis is correct. Lupus is a highly variable disease.
* Some children have obvious disease symptoms with fever, rash, and kidney involvement.
* Others may only complain of not feeling well, being tired, and weight loss.
* Some children may look fine, but may have blood in their urine or other unseen problems that require additional tests that will help the physician to make the diagnosis.
* Although a positive ANA is generally required to make the diagnosis, there are many children with positive ANAs who do not have lupus.
If you have questions about your child's diagnosis you can contact the Lupus Foundation of America (LFA) for a list of chapters with experienced doctors in your area.
Once the diagnosis is established, parents are immediately concerned about what will happen to their child. While lupus can be a severe and life-threatening disease, many children with lupus will do very well.
The prognosis of lupus in childhood depends on the severity of the internal organ involvement:
* Children with significant kidney or other internal organ disease require aggressive treatment.
* Children with mild rash and arthritis may be easily controlled.
However, lupus is unpredictable and no one will be able to predict with certainty the long-term outcome for a specific child. Success in every endeavor is a combination of hard work and good luck. None of us can control good luck. This article is intended to help you get the best outcome for your child by explaining to you the importance and nature of the hard work.
Following doctor's orders
Compliance with physician instructions has been shown to be one of the most important factors in determining outcome for people with SLE .
Research suggests the severity of a child's lupus is determined by many factors which science has not been able to control. However, some very important aspects of treatment that require special attention can make a difference in the outcome of this diseasefor example:
* taking medications as directed
* having blood or urine tests when requested
* keeping scheduled doctor appointments
* following instructions about avoiding too much sun.
Children have special needs
It is important that those caring for the child, i.e., parents and medical professionals, understand these needs. Very important factors in the successful treatment of this disease include:
* The parents' understanding about lupus
* The reasons for the prescribed medications
* The expected outcomes
* Any problems to be aware of.
Everybody with lupus is different
Much of the information and advice for children with lupus is the same as given to adults. You are encouraged to read the other pamphlets available from the Lupus Foundation of America for this information. This article emphasizes only those aspects of lupus and its treatment which are peculiar to children and young adults.
Treatment for childhood lupus is dependent on the degree of severity of the disease. The most important subject for parents of children with lupus is dealing with the side effects of these drugs.
Corticosteroids (e.g. prednisone)
Many children with lupus require dosages of corticosteroids that produce side effects. The most obvious changes that occur are:
* weight gain
* a Cushingoid (rounded, puffy face) appearance
* unwanted hair growth
* stretch marks
These changes are easily visible to other children and may upset you and your child. Over time corticosteroids can cause other more serious problems:
* weak bones
* poor growth in height
* atherosclerosis (fatty deposits in blood vessels that can affect blood flow)
No one wants your child to have these side effects. Side effects can be minimized by keeping the dosage as low as possible, while still maintaining effective control of the disease.
Cytotoxic drugs are one alternative to high doses of corticosteroids. These drugs allow a dramatic reduction in the corticosteroid dosage, often to a level without obvious or severe side effects. This is often a major medical and psychological benefit to children.
However, cytotoxic immunosuppressants carry several risks.
* Short term, cytotoxic drugs carry the risk of damage to the bone marrow that can cause bleeding or make the child unable to fight off an infection. Careful monitoring usually reduces these risks.
* Cytotoxic drugs may increase a child's risk of developing certain forms of cancer.
* There is also evidence that cytotoxic drugs may interfere with the ability to have children in the future.
These are scary problems. Doctors must balance the risk of these future problems against the benefits of better control of the lupus and less corticosteroids. These are complicated decisions no one is happy facing. However, many more people are greatly helped than hurt by these drugs. There is additional important information about immunosuppressive drugs in other pamphlets from the Lupus Foundation of America.
Due to fear and frustrations, parents may turn to other treatments, such as herbal "remedies" or "miracle cures." However, these alternative methods of treatment have not been properly studied for their effects on the human body. They must be subjected to rigorous research studies before they are used, so children are not put in jeopardy. Everyone caring for people with lupus is committed to finding better alternatives to current therapies.
Behavior and responsibility
One of the most difficult problems for every parent is how to let their children "grow up" without letting them take unnecessary risks. This is even harder for parents of children with lupus. The key concept must be, "as normal as possible." Every decision you face with your child (school trip permissions, friends, a sleep over, etc.), ask yourself, would you let them go if they didn't have lupus?
The only big exception is exposure to excessive sunlight, which is known in some instances to make lupus worse. A child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool. If you are unsure, ask your physician.
Special steps parents should take
If your child is participating in short activities, e.g. visiting friends or going to a movie, usually no special arrangements are necessary.
For longer activities, where a child may be away overnight, the situation can be more complicated.
* If they are old enough you can simply send them with their medications.
* In general, children over the age of 10 should know their medications and when to take them.
* If the child is under age 10, be sure there is a reliable chaperone who can take responsibility for the medication and its administration.
* No matter where your child goes, it is important that they carry your doctor's emergency phone number where someone will find it easily if the child is injured or becomes ill.
* For longer trips you should also make sure the chaperone has your doctor's emergency phone number.
* A "medic alert" bracelet should be considered for any child or teenager who is on chronic corticosteroid therapy.
* Some children resent wearing a bracelet, but it can be worn around the neck or even on an ankle, where it is less obvious.
* Unpredictable events do occur, and these "alert tags" provide crucial information and can speed appropriate treatment when a child doesn't know or can't give the necessary information.
* If your teenager resents these as an "emblem" of the disease, let them pick the style and color. Remind them that lots of adults wear such bracelets.
* If necessary you may choose to compromise on a wallet card with their diagnosis and emergency contact information.
Educating your child
The feeling of being overwhelmed can be a very real feeling for parent and child. However, educating yourself and your child can help to alleviate some of the worries and concerns.
How to approach your child is dependent on your child's age. Of course no two children are the same, but these general guidelines can help.
1. For children younger than age 10, excessive explanations aren't very helpful.
* During this period children rely on their parents to "fix everything" and have little sense of responsibility.
* While your child should know that they have lupus, you don't have to spend a lot of time trying to explain it all.
* They will need to understand that lupus is a disease, and that it's not their fault they have it.
* They need to know they didn't get lupus from doing something wrong, that it is not something they caught from someone, and that they cannot give lupus to anyone else.
2. It is important that your child understands the need to take medicine.
* For older children you can begin to explain the names of the medicines and the doses.
* For smaller children this isn't helpful. Sometimes well-intentioned parents go to great lengths to explain every detail to their children as if they were small adults. Under the age of 10 this information is often misunderstood and despite the best intentions it may do more harm than good.
3. For children 10 and older it is important to begin explaining the nature of lupus.
* The transition from a small child who must simply do what they are told, to a mature self-reliant adult, may be a difficult one under the best circumstances. Thus it is important that children with lupus must be allowed to assume a progressively greater role in taking their medications and making choices about their care.
In addition to coping with your feelings and those of your spouse, and your child, you will rapidly become aware that you have to:
1. Educate the school faculty and leaders of organized activities in which your child participates. On behalf of your child, you will have to explain: * absences for doctor's visits
* changed appearance
* restrictions in activities.
* Your doctor and the local Lupus Foundation of America chapter office can be very helpful in this regard.
2. You may also wish to educate your neighbors and friends. Not everyone will be aware of what lupus is or how a person gets lupus. You may help them understand that it is not contagious, and that a person who has lupus is genetically predisposed.
* Sometimes this can be done by sharing information available in pamphlets supplied through the Lupus Foundation of America, or by writing the LFA and requesting information about the disease.
3. Lupus support groups are a good way to help the parent and child meet other children who have lupus, as well as their families, to learn more about their disease and explore ways to cope.
You can ask your doctor or the LFA for assistance in answering additional questions.
Is your child angry?
It is important to recognize that your child will have days when they are upset about having lupus- just as you are upset that they have it! They will be upset about the side effects of their medications and upset about the limitations placed on them because they have lupus. The fact that it's no one's fault doesn't make it better.
You must treat your child just like you would if they were angry about something else. Occasional problems are normal. If the problems become prolonged you may need professional help. No one has a single solution that will work for everyone.
Is your child depressed?
There is a whole pamphlet dedicated to depression in lupus provided by the Lupus Foundation of America. It is very important that parents be aware of this problem. Children who become depressed about having lupus may stop taking their medication without telling their parents. This can be disastrous.
* Watch the medicine bottles.
* Are they getting empty?
* Do you need refills as often as you used to?
* Even if you are the one administering the medication everyday, stop sometimes to watch and make sure the pills are being swallowed, not spit out when you turn around.
* You might be complying with the all the doctor's advice while your child is not.
* If you discover that your child hasn't been taking their medication, talk about it with them, and be sure to let your doctor know.
No one likes being sick!
It is important to remember that most children hate being sick. Often this hatred will be expressed as:
* hatred of the pills
* hatred of the blood tests
* hatred of the doctor's visits
* hatred of advice from parents
Frequently this can be dealt with by reasoned discussion and making sure the child knows why they have to do unpleasant things. Few children in the pre-teen and early teenage group realize their actions may have permanent consequences-that if they do the wrong thing they can't simply "be forgiven and start over." At some point they need to understand that doing the wrong thing could make them very sick.
If you and your child can't work it out, get help
Don't be afraid to ask your doctor for help if you are having trouble getting through to your child. Some children require psychological intervention. Improperly dealt with, a child or young adult's resentment about having lupus may result in risky behavior that could affect their well-being.
Not only does having lupus cause psychological problems, but lupus itself may cause problems with thinking. Sometimes what a child who is refusing their medicine needs is more medicine. It is important to understand the psychological problems, as well as the effects that lupus can have on cognitive (thinking) impairment.
Asking, "What if?"
Even children who appear to be doing well with their lupus can have questions they may be afraid to ask. In the middle and late teenage years, "children" are beginning to think about their life as adults. Children with lupus will wonder:
* Am I going to be able to get married?
* Will I be able to have kids?
* Will I be able to earn a living?
The answer should always be that you expect them to lead productive lives. Since most children with lupus will live well into adulthood, it is important to make sure they understand the importance of doing all the things that can medically help them achieve this goal.
Could anyone else in my family develop lupus?
Studies have shown that close relatives of adults and children with lupus are more likely to get lupus than are individuals randomly selected in the general population. However, the risk is still very small (about 1/50).
As many as one-third of the sisters of a child with SLE may be ANA positive. Physicians have now had the opportunity to follow groups of sisters for many years. Roughly one in 10 have gone on to develop SLE over a 10-year period. However, this also means that nine out of 10 did not.
If one of your other children has symptoms which make you think they might have lupus, have them evaluated by your physician.
There is no specific test for lupus
Remember, a positive ANA does not make the diagnosis of lupus. In the absence of symptoms sufficient to warrant treatment with prednisone, it is appropriate just to carefully monitor the ANA-positive sibling and/or mother of a child with lupus.
One special situation is when a relative of a child with SLE is placed on one of the drugs associated with drug-induced SLE. Often this can be done safely, but these relatives may develop lupus-like symptoms when placed on certain anti-seizure drugs and anti-tubercular drugs.
Lupus: a combination of genetics and environment
Family studies of children with SLE also have shown an increased frequency of serologic abnormalities in the mothers. Because usually these are healthy mothers without evidence of disease, this was surprising. This finding strongly supports the hypothesis that SLE results from the combination of a genetic predisposition and an environmental exposure.
Serologic abnormalities in the fathers were much less common, but that doesn't mean they don't contribute to the genetics of SLE. It only suggests that expression of those genetics as a serologic abnormality may be influenced by sex hormones.
Tuesday, August 14, 2012
I was born with lupus... it is a hard disease to cope with and this only touches on certain aspects of the disease.....
Lupus is known as an invisible chronic illness. Appearance is not an indicator of lupus. Looking good and feeling good are not the same. It is frustrating to have someone say how well you look even when you feel terrible. People who look good have a right to feel bad, no matter what others think and say.
Lupus Erythematosus (Lupus) is a chronic autoimmune disease in which the immune system treats thebody's own healthy tissue as foreign and produces antibodies to attack one's own body. Symptoms includea characteristic butterfly-shaped rash on the face, headache, fatigue, arthritic joint disease, heart damage,shortness of breath, and impaired kidney function. There is presently no cure. Lupus follows an irregularcourse of remissions (inactive time) and flare-ups (active times), and may often be incapacitating. An esti-mated 500,000 to 1.5 million people in the United States suffer from lupus and the disease strikes womennine times more than men. Lupus affects each individual physically. It also affects the person and those thatlove that person emotionally.
While the physical symptoms vary from person to person, people with lupus experience similar emotions. Newly diagnosed patients may have feelings of anger, guilt, sadness, fear, and sometimes, even relief thatthere is a name, an identity for the symptoms they experience. Lupus symptoms are similar to many otherdiseases. Since the symptoms come and go, others may not "believe you" when they hear your complaints.Everyone feels fatigued or achy at times. When finally diagnosed, it is a validation. There is a reason forthese feelings. They are real, lupus is real.It is common to go through a grieving process after diagnosis. The process includes emotional stages suchas shock, bargaining, denial, anger, and depression. While these can be uncomfortable, they are normal feel-ings. The person must grieve for what was, for their healthy self, before they can accept what is and whatis to be. Acceptance arrives sometime during the final stage of the grief process. The individual can say,"Okay, now I need to live my life with this illness as best I can." At this point lupus becomes one segmentof your life and no longer the main focus. Lupus finds its place in your life.The grieving process can take up to two years before one reaches a level of acceptance. Acceptance is noteasy, but once it happens, it provides a level of comfort. It is not unusual if during a flare, the patient expe-riences grief-type feelings again. Because of past experience, acceptance will return more quickly than before.
Side effects of medications is a common frustration. Prednisone can sometimes cause a ravenous appetite andultimate weight gain. Some people experience mood swings; feelings of euphoria one moment and depressionthe next. These symptoms are generally reduced when weaned off the steroids. Other frustrations may include:• Insurance and Medical Concerns: difficulties with health insurance and prescription coverage or lack there-of.• Physicians: Unable to find a physician they trust.• Fear of how this affects their employment.• Family members who do not understand.• Inability to meet daily activity requirements and the feelings of being inadequate.People who have lupus or love someone with lupus mayexperience depression. Symptoms may include:• Feelings of hopelessness, helplessness, or loss of desire for anything pleasurable.• Sleeping more than normal or having difficulty sleeping.• Eating more to "fill up the emptiness inside" or loss of appetite.• Isolation: Patients may stop seeing or talking to those they care about.If these symptoms persist, help must be sought. See a therapist, talk to a doctor, spiritual advisor, relative ortrusted friend. Every city has a crisis line. Help is available.LupusAmerica's Least Known Major Disease
The patient's support system is deeply affected by lupus. While lupus patients experience various emotions, those who love and supportthem also have a variety of feelings and emotions, such as:• Fear they might lose you.• Anger that this happened and how this affects them.• Guilt that you are sick and they are healthy.• Abandoned because you cannot "be there" for them.• Abnormal - everyone else they know leads a 'normal' life.• Financial concerns if you are no longer able to work or if they have to reduce their work hours to care for you.• Resentful of having to take on more responsibilities.• Afraid they may be unable to satisfy you or be satisfied sexually.• Helpless because they cannot "fix you and make you better."If any of these feelings are present, they are normal. These are common emotional feelings everyone experiences dealing with a chronic ill-ness.
Learning to utilize effective means of communication is vital to relationships.• Make time in a neutral territory to have an open discussion.• Do not accuse one another and place your loved one on the defensive. Take ownership of your feelings and discuss how things make youfeel.• Do not give each other platitudes. Do not say things such as "Don't worry things will be fine." "I know someone who feels like you andthey don't act like you." "Don't be such a baby." Preferred examples are: "I cannot understand how you are feeling, but I am here for you." "It makes me sad to know you feel like that." By these statements, you are validating your loved ones feelings. You are allowingthem to feel their thoughts are worthy whether or not you agree.
The only thing predictable about living with lupus is living with its unpredictability. A person may feel wonderful one day, and be in bed thenext. Patients may shy away from making plans for fear of being ill. This can create feelings of isolation. This unpredictability can cause a senseof loss of control. While lupus is often uncontrollable, how one deals with it is controllable. "I cannot control what I have. I can control howI think about what I have." "I cannot control what my loved one has. I can control how I think about what he/she has." Learn to read thebody's signals. Know when the "light is green" and you feel wonderful and energetic. Learn when the "light is yellow." Slow down and be care-ful. Definitely learn to acknowledge when the "light is red". All things stop. Obey the body's signals by resting and caring for yourself or allow-ing yourself to receive care. Stress is something most people with lupus or their loved ones feel. It can be stressful living day to day with a chronic illness. During a flare,functioning normally is difficult. Daily responsibilities are a challenge Even when not in an active period, levels of fatigue may inhibit what other people feel are normal daily activities. It is important to learn new coping and relaxation techniques, how to prioritize, delegate and sometimessay no. It is healing to accept that you do not have to be perfect to accept yourself.Having lupus does not mean life is over. It can mean a new beginning. Life will present new challenges. Begin to focus on the positives, not thenegatives. Accept that which cannot change and be kind to yourself when feeling ill. Take time to grieve and learn new coping skills. Express feelings honestly. Let those supporting you understand how you are feeling. Find a doctor you trust, someone you can be open with. Pace your-self, and learn as much about your illness as possible.If you are the significant other, accept the fact that you cannot fix lupus and make it better. Help your loved one simply by being there. Obtainyour own support system so you can vent your feelings. Make certain you have respite help if you are the caregiver. Accept that the word "self-ish" is a positive, not a negative term. It is vital to care for yourself in order to care for your loved one.Lupus will cause some very difficult days. Become proactive about lupus and not reactive. Remember lupus is only one part of your life. It is not your life.
FOR MORE INFORMATION PLEASE DON'T HESITATE TO CONTACT ME..... I HAVE A LOT OF INFORMATION ON LUPUS,FIBRO,RHEUMATOID ARTHRITIS AND CANCER, ALL OF WHICH I AM FIGHTING!! AND WILL CONTINUE TO FIGHT... I AM GOING THROUGH A MAJOR FLARE AFFECTING MULTIPLE ORGANS AT THE MOMENT... BUT I AM ALWAYS HERE FOR YOU!!
Tuesday, June 26, 2012
Irritable bowel syndrome (IBS) is a disorder of the intestines. It causes belly pain, cramping or bloating, and diarrhea or constipation. Irritable bowel syndrome is a long-term problem, but there are things you can do to reduce your symptoms.
Your symptoms may be worse or better from day to day, but your IBS will not get worse over time. IBS does not cause more serious diseases, such as inflammatory bowel disease or cancer.
What causes IBS?
Doctors do not know exactly what causes irritable bowel syndrome. In IBS, the movement of the digestive tract does not work as it should, but there is no sign of changes in the intestines, such as inflammation or tumors. Doctors think that IBS symptoms are related to problems with the signals sent between the brain and the intestines. This causes problems with the way the muscles of the intestines move.
For some people with IBS, certain foods, stress, hormonal changes, and some antibiotics may trigger pain and other symptoms.
What are the symptoms?
The main symptoms of irritable bowel syndrome are belly pain with constipation or diarrhea. Other common symptoms are bloating, mucus in the stools, or a feeling that you have not completely emptied your bowels.
Many people with IBS go back and forth between having constipation and having diarrhea. For most people, one of these happens more often than the other.
IBS is quite common. Most people's symptoms are so mild that they never see a doctor for treatment. But some people may have troublesome symptoms, especially stomach cramps, bloating, and diarrhea.
How is IBS diagnosed?
Most of the time, doctors can diagnose irritable bowel syndrome from the symptoms. Your doctor will ask you about your symptoms and past health and will do a physical exam.
In some cases, you may need other tests, such as stool analysis or a sigmoidoscopy. A sigmoidoscopy lets a doctor look at the inside of the lower part of the intestine (the large intestine or colon). These tests can help your doctor rule out other problems that might be causing your symptoms.
How is it treated?
Irritable bowel syndrome is a long-term condition, but there are things you can do to manage your symptoms. Treatment usually includes making changes in your diet and lifestyle, such as avoiding foods that trigger your symptoms, getting regular exercise, and managing your stress.
There are also medicines that may help with your symptoms. If diet and lifestyle changes do not help enough on their own, your doctor may prescribe medicines for pain, diarrhea, or constipation.
WHAT ARE THE SYMPTOMS OF IBS?
Symptoms of IBS may include:
Alternating constipation and diarrhea
Feeling that you haven't finished a bowel movement
Mucus in the stool
Often IBS is just a mild annoyance, but for some people it can be disabling. They may be unable to go to social events, work, or to travel even short distances. Most people with IBS, however, are able to control their symptoms through diet, stress management, and medicines.
WHAT CAUSES IBS?
Researchers have found that, for unknown reasons, the colons of people with IBS are more sensitive than usual and react to things that would not bother other people. For example, the muscles of the colon may contract too much after eating. These contractions can cause cramping and diarrhea during or shortly after a meal. The nerves of the colon can be overly sensitive to the stretching of the bowel (because of gas, for example), causing cramping or pain. Diet and stress play a role in IBS for many people, causing symptoms or making them worse.
In women, IBS symptoms may be worse during their menstrual periods, so hormone changes may be involved. Sometimes IBS symptoms appear after another illness.
HOW IS IBS DIAGNOSED?
IBS is usually diagnosed after bowel disease has been ruled out. Your doctor will probably take a complete medical history, do a physical exam, and check for blood in your stool. Other diagnostic tests such as blood tests, X-rays, or a colonoscopy (viewing the colon through a flexible tube inserted through the anus) may be done if needed.
WHAT FOODS MAY CAUSE IBS SYMPTOMS?
Some foods that may cause symptoms include:
Fatty foods like french fries
Milk products like cheese or ice cream (especially in people who have trouble digesting lactose, or milk sugar)
Caffeine (found in coffee, tea, and some sodas)
Carbonated drinks like soda
Sorbitol, a sweetener found in certain foods and in some chewing gums
Gas-producing foods including beans and certain vegetables like broccoli or cabbage.
You may want to keep a journal tracking the foods that seem to cause trouble. You also may want to consult a registered dietitian, who can help you make changes in your diet
WHAT DRUGS ARE USED TO TREAT IBS?
Drugs sometimes used for IBS symptoms include:
fiber supplements and occasional use of laxatives (for constipation)
antispasmodics -- drugs that control colon muscle spasms and help with diarrhea and pain
tranquilizers and antidepressants to help with stress, anxiety, and depression.
Be sure to follow your doctor's instructions for use of all medicines. Some IBS drugs including laxatives can be habit-forming, and all drugs have side effects. Tell your doctor about any over-the-counter medicines that you use. New drugs are being developed for IBS so ask your doctor about new treatments.
WHAT CAN I DO TO HELP BESIDES AVOIDING CERTAIN FOODS AND BEVERAGES?
Drinking lots of water and increasing your fiber intake may help, especially if constipation is a problem. Fiber is found in bran, bread, cereal, beans, fruits, and vegetables. It's a good idea to increase the fiber in your diet gradually to avoid causing gas and pain. Many people with IBS also use a fiber supplement to add soluble fiber, often from psyllium seeds, to the diet
by Jenny Thorn Palter
Two overlapping conditions known to many with lupus are Sjögren’s syndrome and Raynaud’s disease, also known as Raynaud’s phenomenon.
Here are some practical dos and don’ts to living with these diseases.
Sjögren’s syndrome affects the body’s ability to produce moisture in the glands of the eyes, nose, mouth, and vagina. Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma. Sjögren’s syndrome is classified as primary when it occurs alone, or secondary, when another connective tissue disease is present. Prescription medicines for dry eyes and dry mouth are available, as are various over-the-counter lubricating products.
Do keep high-humidity work and home environments.
Do breathe through your nose, not your mouth.
Do be aware that many prescribed medications cause dry mouth (xerostomia).
Do pay close attention to the health of your teeth and gums.
Don’t consume spicy foods or acidic juices, fruits, or vegetables, which can irritate mouth tissue.
Don’t eat hard, crunchy foods that can irritate or tear mouth tissue.
Don’t smoke or spend time in locations where others are smoking.
Don’t use tartar-control toothpaste or teeth-whitening products, which can irritate mouth tissue.
Don’t overuse alcohol (including wine) or mouthwashes that contain alcohol, because they can dry the mouth further.
Raynaud’s disease causes narrowing of the blood vessels, which most commonly affects the fingers and toes. When blood can’t get to the surface of the skin, the affected areas turn white and blue. When the blood flow returns, the skin turns red and throbs or tingles. In severe cases, loss of blood flow can cause sores or tissue death. Prescription medicines can help keep the blood vessels open, but the best treatment is to avoid the cause of the attacks.
Do avoid abrupt changes in temperature, especially going from warm air to air conditioning.
Do soak your hands or feet in warm water at the first sign of an attack.
Do use mittens when taking anything out of a freezer.
Do avoid excess stress.
Do see your doctor if your symptoms become worse or if you notice any sores on your fingers or toes.
Don’t smoke or spend time in locations where others are smoking.
Don’t use vibrating tools, such as an electric hand mixer or power tools.
Don’t go outside in cold weather without a coat, hat, warm socks, and mittens (not gloves, which allow more cold air to get between the fingers).
Q: Can a person with lupus donate blood?
A: To begin with, a person with lupus should always discuss the issue of donating blood with their doctor. You should not donate blood if you are too anemic (a low red blood cell count). Each blood donation service will have their own set of guidelines for eligibility, so be sure to know the guidelines of the donation service you intend to use. According to the American Red Cross, while a diagnosis of lupus was at one time a disqualifier for the donation of blood, this is not longer the case. The Red Cross will allow those with lupus to donate even while taking such medications as Plaquenil and/or Corticosteroids. In contrast to the Red Cross, the National Institutes of Health (NIH) will not accept blood donations from those with lupus. Their thought is that without a full understanding of the causes of disease like lupus and the role of antibodies, they can not ensure that there is absolutely no risk of transmission of harmful elements to the other patients.
In fact, since blood components are separated, the only components in a patient's blood that might be problematic are plasma and/or antibodies. Red blood cells or platelets should be safe to donate as long as the donor has sufficient amounts for themselves, and these are the parts of the blood most often needed by patients who receive blood.
So do your homework on the guidelines of the donation service you have chosen and discuss with your doctor whether it is OK for you to be a blood donor. The LFA commends you for wanting to help.
Q: I was diagnosed with Multiple Sclerosis (MS) 3 years ago, and now my doctor thinks I may have lupus. Is there a connection between MS and lupus?
A: Multiple Sclerosis and lupus are both autoimmune diseases. They are diagnosed and treated in very different ways. There is no direct connection between the two; however, lupus, known as a great imposter, can sometimes mimic or imitate the symptoms of MS.
Q: I have SLE and have been considering light therapy for Seasonal Affective Disorder (SAD). I was wondering if the lights used for such therapy can trigger flare-ups? (due to UV exposure or any other concerns)
A: The majority of lupus patients are sensitive to ultraviolet light. This sensitivity is typically from ultraviolet B (UV-B) but can also be from ultra-violet A (UV-A) in some individuals. The sun and fluorescent lights are constantly exposing us to ultraviolet light. Therefore, it is strongly recommended to lupus patients to avoid ultraviolet light exposure through sun protective clothing, sunscreen, sun block and avoidance. Therefore, when asked by a lupus patient who is considering light therapy for seasonal affective disorder (SAD), we have to ask if the benefit outweighs the risk. There is a potential risk of a lupus flare for the patient using light therapy. However, is the patient demonstrates no photosensitivity and the SAD is so severe that various therapies are not working, it could be considered. I would strongly suggest that a lupus patient considering light therapy for SAD talk with their rheumatologist to weigh the potential risk and benefit.
Photosensitivity -- Photosensitivity refers to the development of a rash after exposure to UV-B radiation found in sunlight or fluorescent light. It occurs in 60 to 100 percent of patients with SLE. Some patients are also sensitive to UV-A (as from a photocopier), and may even be sensitive to the visible light spectrum. Glass protects individuals sensitive to UV-B, but only partially protects those sensitive to UV-A. Blonde, blue eyed, fair skinned individuals are much more photosensitive than brunettes or individuals with pigmented skin; the incidence is also greater in those with anti-Ro antibodies.
More than one-half of lupus patients are sensitive to light. This sensitivity is typically to ultra-violet B (UV-B) but can include ultra-violet A (UV-A) in some individuals.
Q: I have lupus (obviously) and Factor V. Leiden. I know that they are not related, but wonder if one would have an effect on the other.
A: There is absolutely no relationship between lupus and Factor V Leiden. Factor V Leiden is an inherited disorder that can cause risk for blood clots. Some lupus patients have other reasons to have increased risk for blood clots. Some lupus patients also have Factor V Leiden, but that is just circumstance that put both of those risks in one person.
Q: I'm concerned about new reports encouraging people to change all incandescent light bulbs to fluorescent bulbs. Don't fluorescent lights produce ultraviolet rays that are harmful for people with lupus?
A: The issue of lupus photosensitivity is a complex one and one of the least scientifically studied clinical aspects of cutaneous and systemic lupus. It is my opinion that if a standard fluorescent tube lighting source is shielded by a standard acrylic plastic diffuser, there’s virtually not significant risk for people with systemic lupus. These plastic diffusers are available form a variety of companies. However, if a person with lupus I exposed to unshielded fluorescent lighting at close distances for prolonged periods of time, then the cumulative exposure to UVB and UVA could be a problem. You may contact Lupus Now Editor Jenny Allan at firstname.lastname@example.org for a copy of my 1993 publication (a letter to the Editor to the journal Arthritis and Rheumatism) that addresses the issue of ultraviolet light leakage from fluorescent lighting tubes as a risk for lupus photosensitivity.
Q: In 1997, I was diagnosed with lupus. In the beginning my doctor sometimes said "lupus" and sometimes "connective tissue disease." Why?
A: Lupus is one of the several illnesses that have been considered connective tissue diseases. This is an old-fashioned term, but it is still used in confusing cases when the diagnosis is uncertain. This frequently happens to people early in the course of lupus.
Q: How does diabetes affect my lupus and vice versa? What can I do when either get out of balance?
A: Diabetes and lupus are both chronic diseases that can increase the risk for kidney damage, high blood pressure, and heart disease. Keeping lupus under control and blood glucose (sugar) under control are paramount. Modifying al other risk factors for heart disease and avoiding medications that are toxic to the kidneys or rise blod pressure might be of some help.
Q: Is there a connection between chronic fatigue syndrome and lupus fatigue?
A: It is generally thought that chronic fatigue syndrome (CFS) and lupus fatigue are two distinct entities. In 1994, an international panel of CFS research experts convened to draft a definition of CFS that would be useful both to researchers studying the illness and to clinicians diagnosing it. Chronic fatigue syndrome is defined as (1) having severe chronic fatigue of six months or longer with other known medical conditions excluded by clinical diagnosis; and (2) concurrently having four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and pain in muscle after exercising that last more than 24 hours. Lupus fatigue does not have a formal definition. Note that CFS appears in the absence of other medical conditions. Therefore, fatigue can be seen in lupus, but by definition is not related to CFS.
Q: Can lupus cause thyroid problems? If so, what affect does removal of the thyroid have on the body?
A: Autoimmune thyroid problems are relatively common in lupus, but lupus is probably not causing the thyroid disorders. Some genes contributing to lupus also predispose a person to thyroid problems. Also, a protein called "interferon alpha" is increased in the blood of lupus patients, and contributes to both lupus and autoimmune thyroid disease. It may be that specific genes, together with interferon alpha, contribute to the development of both lupus and thyroid diseases independently, rather than lupus causing the thyroid problem. Removing the thyroid will cause the usual problems associated with low thyroid hormone, has not reported to affect lupus.
Q: Will eating nightshade vegetables increase my lupus flares or joint pain? It seems that every place I read about this has a different opinion about this.
A: The nightshade vegetables include white potatoes, tomatoes, peppers (sweet and hot), and eggplant. There are others, but they are not foods that are typically consumed in the U.S. While there is anecdotal evidence that some of these foods can be related to inflammation, there is no solid scientific evidence to support this concept. My advice would be for people to keep track of when they eat these foods, and to look for a pattern between consumption and a flare. They would want to observe a link between a particular food and a flare on multiple occasions -- not just a few times. If there does seem to be a connection, then by all means, a person could avoid one/all of the nightshade vegetables without creating any nutrient deficiencies. Peppers, for example, are high in vitamin C, but so are plenty of other foods (i.e. citrus), so limiting peppers in your diet isn't going to cause any problems. Bottom line -- there isn't any good scientific evidence linking nightshade vegetables to inflammation/flares, but if people believe there is an association for them, then it isn't going to hurt them to omit the offending food from their diet.
Q: Can you tell me the risk a woman with lupus has with having sex with a man with herpes simplex ... genital and/or oral?
A: Lupus itself and the immunosuppressive medicines used to treat lupus increase the chance of infections, including viral infections such as herpes. Evidence suggests that lupus patients have a particular problem with herpetic viral infections. Several things including sunlight exposure and stress can also set off a herpetic viral reactivation.
Q: I've read a little about polycythemia -- does a lupus patient develop this at times?
A: No, it is not common. It's extremely rare. Research on the occurrence of this finds only two case reports of polycythemia in lupus patients. So there is no connection between the two. Lupus is an autoimmune disorder and polycythemia is a condition in which there is increased blood volume and high hemoglobin levels (too many red cells).
There are two kinds of polycythemia: primary (inherited) and secondary (usually acquired from a medical condition that causes low oxygen in the blood such as lung conditions, smoking, etc.) Mild polycythemia is common in people who smoke.
Q: I would like to know; what is lupus serositis?
A: Serositis is the inflammation of the serous membranes (sacs) that surround organs. Serositis is one of the symptoms of lupus listed in the criteria of the American College of Rheumatology. This symptom is known to affect up to 45 percent of people with lupus. Examples of serositis that can be affected by lupus are pleurisy an inflammation of the membrane that surrounds both lungs and pericarditis an inflammation of the sac (pericardium) that surrounds the heart.
Q: Can lupus affect your vision?
A: According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, changes in vision can be a result of lupus or because of the corticosteroids and antimalarials used to treat lupus. Problems can include inflammation of the eye, glaucoma, cataracts, general changes in vision, and blocked tear ducts. On very rare occasions, blindness can result. Warning signs include:
Development of a rash over the eyelids
Mucus discharge from the eye
Sensitivity to light
A sore, red eye
Lack of tears, and eyes that hurt and are dry
Episodes of flashing lights and partial blindness
Q: Can a woman with SLE & taking Medro every day get a tattoo?
A: There are no specific problems that have been associated with tattoos in lupus patients. Keep in mind the small risk of infection with hepatitis B and C. Occasionally lupus patients have been known to have a reaction to the tattoo dye but this is very rare. Remember, if you are on immunosuppressive medication, this may increase the chances of infection and slow healing of the tattoo area. As with other procedures, it is best done when you are in remission or a welled controlled mild disease state. Consult with your physician prior to getting your tattoo.
Q: Are there any restrictions on physical activity for lupus patients? Are there any exercises that have been particularly beneficial for those diagnosed with lupus?
A: Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. Light weights are also good along with resistance. But keep in mind that they will want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help them function better and improve fatigue and your sense of well being. The Lupus Foundation of America in Piedmont, North Carolina has put together a great DVD called The Right Moves for Lupus. It costs about $15 and can be purchased through their website.
Q: I'm going to a three day concert this summer in TN. How can I protect myself from the sun when shade really isn't an option?
A: You are correct that you need to protect yourself from excessive exposure to the sun. First, you need to get a wide brimmed hat (I know it is not the best look, but neither is the skin rash). If possible, try to have an umbrella to shade you. You need to use sunscreen on any and all exposed areas and reapply as needed. There is also a company called Coolibar. They offer a unique range of sun protective clothing, sun hats, sun protective swimwear and multi-spectrum sunscreens. You may want to check out their website. Check with your physician before the concert to make sure that everything is going well with you ... and for any last minute advice.
Q: I need some nutrition advice, as well as advice on vitamins, foods, etc.
A: At this time, there is no specific lupus diet. Most people with lupus do not require special diets. It is important to maintain a nutritionally sound and well balanced diet. A proper diet ensures that we consume all of the necessary vitamins, minerals, and supplements. However, if your doctor feels it would be helpful for you, it may be suggested that you try a reducing diet, salt free diet, or low protein diet or combination of the three. If you have kidney involvement, a salt free low protein diet may be helpful in minimizing water retention.
A healthy intake of vitamins and minerals is important for everybody. If you eat a good variety of nutritious foods to include fresh fruits and vegetables, fiber rich cereals and grains, and lean cuts of meat then you are probably getting all of the vitamins and minerals you need to be healthy. There's little scientific evidence to prove that taking in extra amount of micronutrients such as through supplementation, can help improve your lupus.
Q: I have been told that lupus can be hereditary. I have many people in my family on my mother's side who have lupus. But now I am being told that it can't be hereditary. Can you clear this up for me?
A: Lupus does have a genetic predisposition. This means that if you have a first degree relative in your family who has lupus, you are more likely to develop lupus than someone who does not have a family member with lupus. Even with a family member with lupus, however, your chances of developing lupus are less than 5 percent. Lupus is a multigenic disease, which means it requires a number of genetic factors for someone to develop lupus. This is in contrast to sickle cell anemia or cystic fibrosis which are one gene diseases. So, lupus is hereditary in the sense that it runs in families. The risk of developing lupus, even with a family member having the disease, is small. Routine laboratory screening of family members is not currently recommended. If, however, there are symptoms of arthritis, skin rash etc, then they should see their doctor.
Q: Do you know where I can find help on learning about systemic lupus and cirrhosis of the liver? My daughter is 28 years old, and has both. Her physicians say that her cirrhosis was caused by lupus.
A: There is no association between SLE and cirrhosis of the liver. Patients with SLE often get liver blood tests that are somewhat abnormal; a liver biopsy in some of them shows "fatty livers." There is an entity called Lupod hepatitis, which is actually an autoimmune disease of the liver with antinuclear antibodies. Some skin and joint problems -- but not SLE -- require a liver biopsy to diagnose. People with lupus, like any other medical condition, can develop cirrhosis from other causes, typically viral hepatitis.
Q: I live in a high humidity state and the summers are hard on me. Last summer I spent a week at Bethany Beach in Delaware. I felt great. I used sun screen, beach umbrella, and a long sleeve linen shirt. I never felt so good. Could this be because the humidity is low there? We were there in the middle of July!
A: I prefer my lupus patients to not spend much time in the sun. However, it appears that you tolerate it well. This issue of humidity is not studied and if you do well, it must be good for you.
Q: What happens if one decides not to treat lupus.
A: Because lupus is such a heterogeneous disease, it is difficult to predict or generalize about what would happen if it were left untreated. For the individual patient, a critical question would be what disease manifestations they have. This is because the management and treatment of lupus should be guided by the degree and severity of clinical manifestations. Thus, up to 50% of lupus patients may have non-life threatening features, such as fatigue, joint pain, and rash. Non-steroidal anti-inflammatories (e.g. ibuprofen) and anti-malarials (plaquenil) are frequently used for symptomatic relief in this case. Because there is a risk of disease flare with more severe organ involvement (kidney or lung/heart inflammation, for example), lupus patients should have regular evaluations to make sure life-threatening involvement is not developing. Many lupus doctors prescribe antimalarials even in the setting of mild disease because there is good evidence they may decrease the frequency and severity of flares and have low toxicity.
For patients with severe organ involvement (like kidney inflammation) treatment is very important. Before medications (like steroids and other immunosuppressives) were available to treat lupus, overall 5 year survival rates were less than 50%. With expanded therapeutic options, 5 year survival rates are now over 95%.
Q: I just returned from a dental exam. I had six cavities, which is unusual for me. Could my dental situation and my lupus be connected?
A: Dental decay can have a number of causes, such as frequent intake of sweets or carbohydrates, poor cleaning techniques, dry mouth, and/or the bad luck to be one of those individuals who seem to grow lots of bacteria that cause decay.
I am not aware of a direct connection between tooth decay and lupus. However, dry mouth -- perhaps caused by the medications you may be taking for lupus or by the condition called Sjögren’s syndrome -- can create a terrible problem with decay. However, with a compliant patient, decay can almost always be conquered. It may take daily fluoride applications, dietary changes, prescription mouthwash and use of gums or mints containing significant amounts of xylitol, and of course meticulous daily use of a toothbrush and dental floss.
Editor’s Note: Xylitol, which occurs naturally in many fruits and vegetables, is gaining increasing acceptance as an alternative sweetener because of its role in reducing the development of dental caries (cavities).
Q. My wife’s mother has lupus. We would like to understand the disease and find out if it can be hereditary. Are there any specific health tests we should consider? Is it possible to prevent lupus -- in my wife or our children?
A. Lupus is a complex disease that likely is caused by several interacting features. For example, we know that inherited genes, environmental exposures (such as certain medications, severe exposure to ultraviolet rays, perhaps certain viral exposures at key times) and female hormones are all likely contribute to the development of systemic lupus. Genetic predisposition is only one factor.
Indeed, the majority of SLE cases that develop are sporadic (that is, no known relative has SLE). When looking at identical twins, in only 50 percent of cases do both siblings develop lupus. Normally we tell young women with lupus that the risk of their child developing the disease is only nominal, only 1 to 5 percent.
Currently, no screening or genetic tests are available. We encourage family members to lead active, healthy lives. Sunscreen protection is always a good idea. If symptoms develop (joint swelling and pain, unexplained rashes, atypical chest pain), we encourage family members to seek evaluation from their regular doctors, and to be sure to mention the family history of SLE.
Q. Is the use of tanning beds okay for people with lupus?
A. In my opinion, no. The bulbs in tanning beds produce ultraviolet light rays. It is the ultraviolet light rays that cause the skin to tan. The majority of people with lupus tend to be unusually sensitive to ultraviolet light. That is to say, exposure to excessive ultraviolet light, especially the UVB sunburning rays, can cause lupus skin lesions to appear, or make existing lupus skin lesions worse. Ultraviolet light can also activate the internal, or systemic, manifestations of lupus in some people.
There have been many examples of lupus skin disease patients who were thought to have psoriasis instead, and were then treated for psoriasis in medical phototherapy cabinets that are similar to tanning beds. A number of these people almost died from severe activation of their systemic lupus following such mistaken treatment.
Some research suggests that very long ultraviolet light wavelengths, in what is called the "UVA-1" range, can improve certain forms of lupus skin disease and mild forms of systemic lupus. This research has been somewhat controversial, because other research has found that higher doses of the same UVA-1 wavelengths are capable of aggravating the systemic manifestations of lupus. Therefore, the biological effects that people with lupus might experience (i.e. getting worse or better) are likely to be critically dependent upon the amount of the different wavelengths of ultraviolet light energy that their skin receives.
In a routine commercial tanning bed setting, it would be quite difficult for people with lupus to know how much of the various UV wavelengths they are receiving. Thus, for people with lupus, visiting a tanning salon may be too risky.
Q: Does lupus always eventually go into remission?
A: The simple answer is no. The more complex answer is that, for the majority of patients, the disease is characterized by periods of flares (i.e., active disease) and periods where things are relatively quiescent (i.e., inactive disease). In the latter situation, quiescence is usually achieved with medication.
Remission may be harder to define. One definition is that there are no symptoms, the patient is taking no medications, and all tests -- including the antinuclear antibodies -- become normal. In my study published 20 years ago, fewer than 6 percent of patients achieved that goal.
Therefore I prefer to say that lupus may often become quiescent, but some medication may be required to keep it that way.
Q: Is there anything I can add to my diet that could lower the inflammation that lupus causes?
A: There has been considerable interest in the influence of dietary factors on many different autoimmune diseases, including lupus. Much of this interest has focused on omega-3 fatty acids because of their potential effects on inflammation. Animal fats are a source of omega-6 fatty acids. Fish, flaxseed and canola oils, and green, leafy vegetables are sources of omega-3 fatty acids. The relative amount of omega-6 and omega-3 fatty acids in the diet affects the types of prostaglandins and other compounds the body produces that influence the inflammatory response. The omega-3 fatty acids in particular result in the production of more anti-inflammatory compounds.
There has been one large study of dietary factors in relation to lupus disease activity. In this study of 216 lupus patients in Japan conducted by Yuko Minami, M.D., there was no association found between intake of total fat, type of fat, or omega-3 fatty acids and subsequent disease activity over a four-year period. However, higher intakes of antioxidants (for example, vitamins C and E) were associated with decreased disease activity.
Thus, although currently available studies suggest that diets high in antioxidants -- and possibly omega-3 fatty acids -- may help lupus symptoms, this is still an unanswered question. The role of antioxidants in disease progression and activity is a relatively under-studied area of research.
It is important to discuss any major change in your diet, especially changes that include use of dietary supplements, with your doctor. There may be potential interactions with prescribed medications or other aspects of your care that are important for your physician to evaluate.