Help For The Newly Diagnosed With Lupus

Having a new diagnosis of Systemic Lupus Erythematosis can be extremely overwhelming, frightening, and may lead to feelings of isolation, anxiety and despair. So what can you do to get past this point and move to a place of understaning, acceptance, and coping, while maximizing health.

The following is from the Lupus Alliance of America:

Hearing the diagnosis for the first time can make your world stand still or can make your head spin. What does this mean? How do I tell my family? Why is this happening to me?
By the time your doctors have a conclusive diagnosis they have already learned many things about your health and lifestyle. Their recommendations will help you with the “next steps” in managing lupus. The good news is now you can start treating the disease and not just reacting to the symptoms.

The onset of lupus may be acute, resembling an infectious process, or it may be a progression of vague symptoms over several years. As a result, diagnosing SLE is often a challenge. A consistent, thorough medical examination by a doctor familiar with lupus is essential to an accurate diagnosis. This must include a complete medical history and physical examination, laboratory tests, and a period of observation (possibly years). The doctor, nurse, or other health professional assessing a patient for lupus must keep an open mind about the varied and seemingly unrelated symptoms that the patient may describe. For example, a careful medical history may show that sun exposure, use of certain drugs, viral disease, stress, or pregnancy aggravates symptoms, providing a vital diagnostic clue.

No single laboratory test can definitely prove or disprove SLE. Lupus is usually easy to diagnose when the individual has many of the more characteristic symptoms and signs, but is made more difficult if none or only a few are present. Laboratory tests are usually conducted to help confirm or reject the diagnosis. These tests may include a blood count (CBC), looking for low number of white blood cells, red blood cells, and/or platelets. The urine is examined for protein and red/white blood cells. Blood tests may be done to measure kidney function. A variety of laboratory tests, X rays, and other diagnostic tools are used to rule out other pathologic conditions and to determine the involvement of specific organs. It is important to note, however, that any single test may not be sensitive enough to reflect the intensity of the patient’s symptoms or the extent of the disease’s manifestations.

The American College of Rheumatology (ACR), an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles, has developed and refined a set of diagnostic criteria. If at least 4 of the 11 criteria develop at one time or individually over any period of observation, then the patient is likely to have SLE. However, a diagnosis of SLE can be made in a patient having fewer than four of these symptoms.

ACR Criteria for Diagnosing SLE

• Malar rash
• Discoid rash
• Photosensitivity
• Oral ulcers
• Arthritis
• Serositis (pleuritis or pericarditis)
• Renal disorder (persistent proteinuria or cellular casts)
• Neurological disorder (seizures or psychosis)
• Hematologic disorder (anemia, leukopenia or lymphopenia on two or more occasions, thrombocytopenia)
• Immunologic disorder (positive LE cell preparation, abnormal anti-DNA or anti-Sm values, false-positive VDRL syphilis test)
• Abnormal ANA titer

The follwoing is from the Lupus Foundation of America http://www.lupus.org

            DEFINING LUPUS

QUESTIONS & ANSWERS

Q  Where did the name “Lupus” come from?

The term Lupus (Latin for “wolf”) is attributed to the thirteenth-century physician Rogerius, who used it to describe facial lesions that were reminiscent of a wolf's bite.

Q  What happens in autoimmune diseases like Lupus?

The immune system is designed to protect and defend the body from foreign intruders (bacteria, viruses). You can think of it like a security system for your body. It contains several different types of cells, some of which function like "security guards" and are constantly on patrol looking for any foreign invaders. When they spot one, they take action, and eliminate the intruder.

In Lupus, for some reason and we don't know why, the immune system loses its ability to tell the difference between a foreign intruder and a person's own normal tissues and cells. So, in essence, the "security guards" mistakenly identify the person's own normal cells as foreign (antigens), and then take action to eliminate them. Part of their response is to bring antibodies to the site that then attach to antigens (anything that the immune system recognizes as non-self or foreign) and form immune complexes. These immune complexes help to set in motion a series of events that result in inflammation at the site. These immune complexes may travel through the circulation (blood) and lodge in distant tissues and cause inflammation.

Q  What are the symptoms of Lupus?

Symptoms of Lupus vary widely depending on the individual case and the form of Lupus present. Most people with Lupus do not experience all of these symptoms. This list only serves to alert people to clues that might indicate the presence of Lupus in an undiagnosed person.

• · Achy or swollen joints
• · Persistent fever over 100 degrees
• · Prolonged, extreme fatigue
  • · Skin rashes, including a butterfly-shaped rash across cheeks and nose
  • · Pain in the chest on deep breathing
  • · Anemia
  • · Excessive protein in the urine
  • · Sensitivity to sun or ultraviolet light
  • · Hair loss
  • · Abnormal blood clotting problems
  • · Fingers turning white and/or blue in the cold
  • · Seizures
  • · Mouth or nose ulcers lasting longer than two weeks

Q  Are there different kinds of Lupus?

There are four forms of Lupus.

(1)          Cutaneous Lupus erythematosus affects the skin. There are many different types of cutaneous Lupus including chronic cutaneous LE (CCLE), which is sometimes called discoid; subacute cutaneous LE (SCLE); and acute cutaneous LE (ACLE).

(2)   Systemic Lupus erythematosus (SLE) attacks multiple systems in the body which may include: the skin, joints, lungs, blood, blood vessels, heart, kidneys, liver, brain and the nervous system.

(3)          Drug-induced Lupus may develop after taking certain prescription medications. Symptoms generally disappear, within weeks to months, after the drug is discontinued.

(4)   Neonatal Lupus is a rare condition in the fetus and newborn child. It is not the same thing as SLE.

Q  Is Lupus like cancer or AIDS?

No. In AIDS (Acquired Immune Deficiency Syndrome), the immune system is underactive; it is deficient. In Lupus, the immune system is overactive, producing large quantities of antibodies. AIDS is contagious, but Lupus is not. The majority of people diagnosed with AIDS die from their disease, whereas the majority of people with Lupus can expect to live a normal life span. 

Q  Is Lupus a fatal disease?

Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-to-90% of people with Lupus can expect to live a normal life span. Lupus does vary in intensity and degree.  There are people who have a mild case; those who have a moderate case; and some who have a severe case of Lupus, which tends to be more difficult to treat and bring under control.

For people who have a severe flare-up, there is a greater chance that their Lupus may be life threatening. We know that some people die of this disease and because of that we have a tremendous respect for the potential power of Lupus.

People frequently read in the literature that 80-to-90% of people with Lupus live for more than 10 years. Unfortunately, this is often misinterpreted as "people with Lupus live for only 10 years." Let us clarify this statement.

It is important to understand that the "10 years" does not represent the number of years the person will live, but rather the number of years involved in the study. The study followed patients with Lupus from the time of diagnosis for a period of 10 years. At the end of this research period, they were able to conclude that 80-to-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know there are many people who have been living with Lupus for 15, 20, 25, 30 and 40 years. Hence the expectation that most people with Lupus will live for many years.

Q  When people die of Lupus, what do they usually die of?

Overwhelming infection and kidney failure are the two most common causes of death in people with Lupus. The other most common causes are central nervous system involvement, blood clots, and cardiovascular complications.


INCIDENCE AND PREVALENCE

Q  Who gets Lupus?

Lupus can occur at any age, and in either sex. Nine out of ten people with Lupus are women. During the childbearing years (ages 15-44) Lupus strikes women 10-to-15 times more frequently than men.

People of all races can have Lupus; however, African American women have a three times higher incidence (number of new cases) and mortality than Caucasian women. They tend to develop the disease at a younger age and to develop more serious complications. Lupus is also more common in women of Hispanic, Asian, and Native American descent.

Q  Do hormones play a part in Lupus?

We do not know for sure. There are many personal accounts (anecdotal reports) of Lupus flaring with pregnancy (see section on Lupus Flare and Remission), the menstrual cycle, use of birth control pills, and use of hormone replacement therapy. Lupus has a 9:1 female to male ratio so it is likely that hormones play a role, perhaps by influencing the immune system.

Q  Does Lupus occur more often in certain geographical areas?

No.

           CAUSES


Q  Is a person born with Lupus?

Scientists believe that certain people have a “predisposition to the disease;” that is, a person may be born with a built-in possibility of developing Lupus.

Q  Is Lupus stress related?

We do not know for certain. There are many anecdotal reports of Lupus flaring during or after a stressful time, but this question requires further scientific study.

Q  Is Lupus hereditary?

We suspect (but do not have scientific proof) that people inherit something from their parents that predisposes them to develop Lupus. They are not necessarily destined to develop Lupus, but they may be more susceptible. At the present time, there are no genetic tests to determine who is susceptible to Lupus and who is not.

Q  Is Lupus related to pollution or toxic chemicals?

We do not know. The cause of Lupus, and many other autoimmune diseases, remains unknown. The respective roles of genetic and environmental factors in triggering Lupus remain to be determined. The National Institutes of Health (NIH), the principal biomedical research agency of the United States Government, established the National Institute of Environmental Health Sciences (NIEHS) to study issues related to environmental health.

Q  What is a trigger?

It is believed that certain things may trigger the onset of Lupus or cause Lupus to flare. Trigger factors include:

• Ultraviolet (UV) light
• Certain prescription drugs
• Infection
• Certain antibiotics
• Hormones
• Extreme stress

     TYPES OF LUPUS

A.  Systemic Lupus Erythematosus  (SLE)


QUESTIONS & ANSWERS

Q  Why is systemic Lupus so difficult to diagnose?

It is difficult for a number of reasons:

• It is a multi-system disease.  Before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body and lab work that supports the presence of a multi-system disease.

• It is a disease that does not typically develop rapidly, but rather develops slowly and evolves over time. Symptoms come and go and it generally takes time to gradually accumulate enough symptoms to indicate that a multi-system disease is present.

• It is known as a Great Imitator because it mimics so many other diseases and conditions.

• There is no single diagnostic test for Lupus. In fact, many people may have positive Lupus tests, particularly the anti-nuclear antibody test, and yet NOT have the disease.

Q  How is systemic Lupus diagnosed?

Physicians have to gather information from a variety of sources: past medical history, lab tests and current symptoms. They use a list of 11 criteria to help diagnose SLE. A person needs to satisfy at least 4 out of the 11 criteria before the diagnosis can be pinpointed. Some criteria, such as a biopsy diagnosis of kidney Lupus, can carry more weight.


Of the 11 criteria, 7 relate to symptoms and 4 have to do with lab tests. The ANA test is used as a screening test for systemic Lupus. We know that 95% of people with SLE have a positive ANA. Therefore, if a person has many symptoms of systemic Lupus and their ANA test is negative, that's generally regarded as pretty good evidence against Lupus being the explanation for the symptoms they are having.

If on the other hand, the ANA comes back positive, that IS NOT proof of Lupus. The positive ANA is only an indicator; it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions including rheumatoid arthritis; Sjögren's syndrome; and scleroderma; infectious diseases such as mononucleosis; malaria; and subacute bacterial endocarditis (SBE); and other autoimmune diseases including autoimmune thyroid disease and autoimmune liver disease.

Certain medications can also cause a positive ANA. About 20% of the general population when tested will have a positive ANA and not have any of the above mentioned illnesses. The ANA is only a test and like a high cholesterol value, a positive ANA doesn't necessarily equate with having a disease.

So, a positive ANA, by itself, is not diagnostic of any one particular disease and may be present in people who have no illness. Although it is often referred to as "a Lupus test," it is not like a pregnancy test where a positive result can mean only one thing. The ANA is only an indicator, which points in several possible directions. A positive ANA satisfies only one criterion. A person would need to satisfy at least 3 additional criteria.



Q  How long will a flare last? How long will a remission last?

There is no way of predicting how long a flare will last, nor is there any way of predicting how long a remission will last. It is frequently said about Lupus that the only thing that is predictable about Lupus is its unpredictability. So we have no way of forecasting how long a flare or a remission will last. Sometimes changes in symptoms or lab tests predict future changes.

Q  I've had Lupus for two years and haven't had a remission yet. Is this possible?

Yes. Lupus takes a highly variable course. Some people will have a course where their Lupus flares-up and then simmers down and goes into remission. On the other hand, some individuals have a more chronic (long-lasting) course where they have a chronic state of flare and have symptoms day-in and day-out.

Q  How can I tell if my Lupus is active?

When a Lupus flare occurs, people will usually notice a return of the symptoms they experienced previously, but sometimes they will notice new symptoms. These may include, but are not limited to:

• Fever
• Swollen joints
• Increase in fatigue
• Rashes
• Sores or ulcers in the mouth or nose
• A temperature over 100 degrees, not due to an infection, is often a helpful sign in identifying a flare.

Q  When should I call the doctor?

You should call the doctor about any change in symptoms or worsening of your Lupus as soon as possible. You should also be aware that there are certain symptoms that may require that you see your doctor immediately. These symptoms or signs include the following:

• Blood in your stool or vomit.  You should call your physician  immediately
• Severe abdominal pain
• Chest pain
• Seizures
• New onset of a fever or if your fever is much higher than it usually is

• Excess bruising or bleeding anywhere on your body
• Confusion or mood changes
• A combination of symptoms such as severe headache with neck stiffness and fever. This combination could be serious and you need to let your doctor know immediately.

There are other reasons why you should call your doctor. For example, if the doctor has put you on a new medication and you have been taking it as prescribed, for the period prescribed, and your symptoms are no better or are worse, you need to let the doctor know.


Q  Are there any medications people with Lupus should avoid?

There are no absolute contraindications to needed and appropriate medications for a person with systemic Lupus. Your physician will watch for allergic reactions to medications, and any connection between flares and estrogen or oral contraceptives.

People with Lupus should be especially careful if they are prescribed sulfa antibiotics. These medications (Bactrim, Gantrisin, Septra) are often prescribed for urinary tract infections and may cause an increase in sun sensitivity and occasionally lower blood counts resulting in disease flares. People with known sulfa allergy are advised not to use Celebrex, a non-steroidal anti-inflammatory drug, or Dyazide, a sulfa diuretic (water pill).

PREGNANCY


Q  Will I be able to have a family?

Years ago women with Lupus were advised not to have children. Today, unless there is moderate to severe organ involvement or if the woman must take immunosuppressive/immunomodulating medications that would place her or the baby at risk, there is no absolute reason why a woman with Lupus should not get pregnant. 

Q  Is pregnancy in a woman with Lupus considered high risk?

While it is certainly possible for women with Lupus to have children, pregnancy may not be easy and all Lupus pregnancies should be considered “high risk.” Lupus patients should be cared for by physicians trained to manage "high risk" pregnancies so that the potential problems of Lupus and pregnancy are decreased. The presence of Lupus nephritis before conception increases the chance of having complications during pregnancy. During pregnancy, about 20% of women with Lupus will experience toxemia of pregnancy (or pre-eclampsia, or pregnancy-induced hypertension).

Q  Is there a time to try and get pregnant and a time not to try?

Your Lupus should be under control and in remission before trying to get pregnant.  Getting pregnant when the Lupus disease is active could result in a miscarriage, a stillbirth, or other serious complications. Women who conceive after five to six months of remission are less likely to experience a Lupus flare than those who get pregnant while their Lupus is active. Women in Lupus remission have much less trouble during their pregnancy than do women with active disease. Babies of women in remission do much better, and everyone worries less.

Q  Will the baby be OK?

Not all of the problems of pregnancy with Lupus have been solved, but pregnancies are possible, and normal children are the rule. Currently, more than 50% of all Lupus pregnancies are completely normal, while 25% of women with Lupus deliver normal babies prematurely. Fetal loss, due to spontaneous abortion (miscarriage) or death of the baby, accounts for less than 20% of Lupus pregnancies.

Q  Will my baby have Lupus?

About 33% of people with Lupus have an antibody known as anti-Ro, or anti-SSA, antibody. About 10% of women with anti-Ro antibodies, which is about 3% of all women with Lupus, will have a baby with a syndrome known as neonatal Lupus.

Neonatal Lupus is not SLE. Neonatal Lupus consists of a transient rash, transient blood count abnormalities, and sometimes a special type of heart beat abnormality. If the heart beat abnormality occurs, which is very rare, it is treatable and permanent. Neonatal Lupus is the only type of congenital abnormality found in children of mothers with Lupus.

For babies with neonatal Lupus who do not have the heart problem, there is no trace of the disease by three to six months of age, and it does not recur. Even babies with the heart beat abnormality problem grow normally. If a mother has had one child with neonatal Lupus, there is about a 25% chance of having another child with the same problem. There also is a small chance that the child will develop systemic Lupus later in life.

LIVING BETTER WITH LUPUS

Q  I was diagnosed with systemic Lupus. Are there any do's or don'ts with regard to nutrition and exercise?

There is no such thing as “a Lupus diet.” People with Lupus should consider following a diet such as the American Heart Association's diet or the American Cancer Society's diet. These are both well-researched diets that have common components, they are low in fat, low in sodium, high in fiber, low in refined sugars. They are also balanced and include appropriate amounts of all the different food groups. If you find, however, that certain foods seem to aggravate or consistently cause a flare-up of your Lupus symptoms, you should certainly avoid eating those foods.

Alfalfa sprouts are in the legume family and contain an amino acid, L-canavanine. It can stimulate the immune system in people with Lupus and increase inflammation. Other legumes are safe to eat as they have a much lower concentration of L-canavanine compared to alfalfa sprouts. Check labels on health food packaging as alfalfa may also be found as an ingredient in food products.

Vitamins - In general, a multi-vitamin is reasonable, but excess vitamins can be potentially dangerous and should be avoided.

Exercise - Exercise is encouraged for people with Lupus, particularly during a time when Lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. But keep in mind that you want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help you function better and improve fatigue and your sense of well being.

Fatigue - When your Lupus is active, you very often will suffer with fatigue. It is important to recognize this as a signal that your body needs to rest. It is essential that during a time of flare you get sufficient rest. This may include naps during the day, modifying your schedule as well as restructuring your priorities. Adjusting to fatigue often requires that you learn how to pace yourself in order to accomplish the things you want to accomplish throughout a day. Regular aerobic exercise that achieves enhanced physical conditioning, usually helps fatigue. Avoid strenuous exercise if you have fever or other signs of VERY active disease.

Sleep - Get plenty of it, but keep in mind that when you are coming out of a flare you need to gradually resume your normal activities slowly over a period of time. This may require naps during the day—a brief catnap can be of tremendous help. It's important to get enough sleep at night and to pace yourself during the day so you aren't exhausted.

Medications - Be sure and take medications as prescribed by your physician. If you develop any side effects, let your physician know. Make it a point to understand what the medication you take is supposed to do so you will be able to recognize if it is indeed working. Also, ask how long before you should see the effects of the medication and if you find it's not working within the time frame, let your doctor know.

Work schedule -The type of work schedule someone with Lupus can accommodate is variable. Many people with Lupus are able to work a full-time job, others find they have to cut back to part-time. Some people find they are unable to work and some apply for and receive disability payments. 

 PROGNOSIS

Q  Will I be able to continue working full-time?

Many people who have Lupus are able to continue working full-time. However, since Lupus affects people to varying degrees,  there is no way of predicting what your course of Lupus will bring in the future. Some individuals find they have to cut back to part-time or try modifications of their work environment or schedule. Some individuals find they have to take a leave of absence for a period of time. Others find their Lupus activity is such that they are unable to continue working, and some may go on disability.

Q  Will I live long enough to see my children grow up?

The majority of people living with Lupus today, in fact 80-to-90% of them, can expect to live a normal lifespan.

Q  Will I become crippled and end up in a wheelchair?

People are frequently concerned that the arthritis associated with Lupus will result in crippling deformities. Lupus arthritis generally does not cause deformities of the joints. Occasionally, avascular necrosis of bone, related to steroids and Lupus, may occur and require total hip or knee replacement surgery.

Q  My child has Lupus. What is the prognosis?

The prognosis for children and adolescents with systemic Lupus has improved dramatically over the past twenty years. With modern therapy, children do nearly as well as adults.

For more information visit the LFA Research, Programs and LFA Funded Projects areas of www.lupus.org.




The following is from St. Thomas Lupus Trust UK

Advice for Newly Diagnosed Patients
Lupus is now recognised as an important and common illness of modern times. It is a disease in which the immune system goes 'wrong', becomes overactive. It can affect any organ of the body. It is difficult to diagnose lupus as the symptoms can be so diverse, including for example; fatigue, rashes, allergies, depression and kidney failure it is called the 'great mimic'. There is presently no cure. Lupus affects each patient individually, however most patients experience 'flares' when the lupus is particularly active and 'remission' when the lupus is inactive.
Even though it's a shock when a diagnosis is received, a lot of lupus patients say they feel relief that they can put a name to their illness, this often comes after many years of misdiagnosis. Having lupus is not the end of your world, it is a serious illness which will have to be monitored but there's no reason why you shouldn't continue to lead a full life, even though you might have to make some adjustments.
Education
 Learn as much as you can about the condition so that you can recognise possible new symptoms, so that you are then able to alert your doctor. When gathering the information avoid books from the library as they are usually out of date, also be very wary of material you read on some websites as they can give misleading/wrong/out of date information and patients become misinformed and scared.
Diet & Exercise
 Eat a well balanced diet. There are no particular foods recommended (alfalfa sprouts should be avoided) but obviously following a healthy diet including all nutrients will help. We have trialled and recommend, the Low GI/GL diet here at the unit with great success. Patients reported benefits such as - less tiredness/more energy, better quality/more sleep at night, mood elevation, weight loss. Please see our article on the website on diet and lupus by Dr David D'Cruz. If you want to take supplements or natural remedies you need to check with your doctor or specialist (for example echinacea is not recommended for lupus patients).
Exercise is recommended, but you should not overstrain your joints. Swimming and particularly hydrotherapy can be beneficial; also gentle exercise such as walking or Tai Chi may be helpful.
Rest
 Rest is vital to allow your body to recuperate and lack of sleep will make you feel even more unwell. At first you may find it difficult to accept the fact you will need extra rest, you must recognise your bodies signals that it needs to rest. Daily chores can be impossible when you are in a flare, if the hoovering needs doing and you feel tired let it wait, it really won't matter. You must learn to listen to your body's signals, learn to pace yourself, prioritise and even say no. Try to get plenty of sleep, 'catnaps' can be very beneficial. You also need to learn to pace yourself throughout the day so that you don't get overtired.
Try to manage stress levels where possible. Stress can trigger a "flare". Some patients benefit from alternative therapies such as yoga.
Sun
 70-80% of all lupus patients react to the sun's rays and if exposed their disease may become more active; therefore all patients should wear high-factor sun block when exposed to the sun and this should be reapplied every 2-3 hours. There are a number of companies that supply UV filter clothing.
Family and Friends
 It is very difficult living with a chronic illness, patients often feel isolated and may stop seeing or talking to those they care about. Feelings of anger regarding having lupus is common. Changes to a previous lifestyle may cause frustration. Lupus is very unpredictable; a patient may feel very well then suddenly feel very ill. This often culminates in patients being wary of making definite plans such as socialising etc. Patients are often told that they look really well; appearance is not an indicator of lupus. Patients look well and feel dreadful. As well as educating yourself you need to help educate those around you so that they understand how you feel.
Family members may feel angry and frustrated that you are ill and they 'can't make you better'. They may also feel guilty that you are sick and they are healthy and even feel resentful that they have to take on more responsibility, in the home or financially.
This is a helpful article about how to explain lupus to children: http://www.lupusinternational.com/Living-With-Lupus/Overview/How-Do-You-Explain-Having-Lupus-to-your-Children-.aspx

Depression
 Many patients with lupus suffer from depression. When you are feeling ill it is hard not to feel depressed. When feeling depressed it's hard not to spend a lot of time thinking about your illness. It's a vicious circle. Some people find it beneficial to talk to others with lupus; some have a trusted friend or family member they prefer to talk to. Medication, stress reduction/relaxation techniques and gentle exercise can help. By distracting yourself from your illness you can lessen your awareness of the pain, activities such as watching television, listening to music, taking up a hobby or volunteering can help do this.
Attitude is everything. Above all it is important to remain positive, avoid talking to people who do not remain positive. Try to stay as active, mentally and physically, as possible. Yes, you will have new limitations but most patients when their disease is under control can lead normal active lives. When you have lupus you may have some very difficult days, you need to learn how best you personally can cope with them.
Lupus is only one aspect of your life, not all of it.



From Cure4lupus.org:

It is a bit difficult to give too much direct advice to newly diagnosed patients because Lupus can be so different from one person to the next. Here are a few basic tips however that are universal for all Lupus patients.
1. Know that you are not alone!
  Lupus can make you feel like a "medical wonder" or a "freak" but we can guarantee that there are hundreds if not thousands of people going through the very same thing at the very same time. There are even more people who have gone through it and many will go through it in the future. It is very important to be able to talk about what you are going through with others who really "get it"! To find these people, there are support groupsin most cities, you can get involved with your local Lupus charity, or you can find them on the Internet with message boards, blogs, social networking sites, etc.
2. Get as much support as you can! 
You will need a network of supportfrom family and friends as well as others experiencing the same difficulties. Your family and friends will need to be educated in order to understand even a little bit of what you are going through. This can be especially difficult, many times family and friends just do not understand what it is like for you. With loving intentions they can be insensitive, expect too much of you, and they can push too hard. Family members may think you are lazy, not trying hard enough, just don't want to do things, or just want attention. The best way to combat this is to do your best to inform and educate them and then just understand that they don't know what it is like unless they have dealt with something very similar.
3. Get doctors that you can communicate well with. 
You will need a primary, a Rheumatologist and depending on what organs are involved, perhaps a neurologist, cardiologist, dermatologist, nephrologists, etc. Your primary care physician can refer you to a Rheumatologist and they will refer you to any other specialist you need. It is important that you are comfortable and confident in your doctors. If you are not, find another one. Ask lots of questions! Keep a list of questions to take to doctor's visits with you. more tips on doctor visits...
4. As a Lupus patient the best thing you can do for yourself is to get educated about Lupus especially, but everything health related. A good place to start is our Lupus Information page. You can also visit otherLupus websites and our Useful Links page for resources. Study everything you can about Lupus, nutrition, pain management, related conditions, and anything related to your body. There may be things you can do such as eating better, exercise, taking care of other conditions, balancing your hormones, etc. that can minimize Lupus symptoms as well as give a clearer picture of what is actually going on with the Lupus. There are so many different symptoms of Lupus that can also be caused by medication side effects or other conditions. If you rule out other causes you can treat the Lupus more effectively.
5. The goal of Lupus treatment right now is to reduce and minimize flares.
  There are many things that can cause flares. You should try to identify what triggers your flares. Possible triggers include stress, illness, sun exposure, certain foods etc. The best way to help you do this is to keep a journal of your symptoms, what makes them better or worse, rest gotten, medications taken, food and drink consumed, sun exposure, and other possible triggers.
6. Balance activity and rest. 
This is a VERY difficult thing to do!Exercise and rest are both very important but too much of either can start a cycle of inactivity and eventually de-conditioning or even initiate a flare.
7. Be prepared for bad days. 
With Lupus, you are guaranteed bad days. Some times bad days turn into bad weeks, bad months and bad years. During these bad times it is important to remember that there will be better times. Sometimes it can seem like they will never end, but they will. It is also important to take advantage of the good times. Appreciate every good day you have, do the things you wish you could do when you are at your worst.
8. Do what you can to raise awareness and support research to find a cure. 
We all need to speak up and let the world know that over 50 years with no advancement in treatments is not acceptable. You can do this in many, many ways. You can do it with Lupus awareness merchandise, bywriting to your legislators, spreading the word to those you come into contact with, voting for politicians who support Lupus issues, participating in Lupus fundraisers and Lupus events, donating time and/or money toLupus research and much more! Things will not change if we keep quiet.
9. Consider visiting a therapist/Psychiatrist.
  Depression and psychosis can both be actual symptoms of Lupus but much more commonly just the stresses and difficulties of dealing with chronic illness can cause depression and anxiety which worsen other symptoms. Having someone to talk to and perhaps medications can make a world of difference!



Educate yourself as much as possible. The following is a list of informative and quality web sites regarding lupus.:

http://www.lupus.org/newsite/index.html

http://www.lupus.org.uk/what-is-lupus/general-features

https://www.facebook.com/lupusworld

http://mrslupus.blogspot.com/

http://www.hss.edu/condition-list_lupus-sle.asp

http://www.lupusinternational.com/Living-With-Lupus/Newly-Diagnosed-1-1/Lupus-FAQ-s.aspx

http://forum.wehavelupus.com/forumdisplay.php?7-Newly-Diagonosed

http://www.niams.nih.gov/health_info/Lupus/