Questions You Need To Ask Your Doctor About Your Lupus Diagnosis.
I remember when I was first diagnosed with lupus. Getting to the diagnosis took several years, and many different diagnoses, involving several organs. The first time I remember hearing the word "lupus" was from my neurologist who was baffled by the amount nerve damage that he found in my body. He was the one who suggested that i get tested for lupus. He did not understand how someone who ate right, who was as fit, physically, as I was could be so sick.
My primary care physician, hesitantly, got the blood drawn and sent the tests off. They came back positive for lupus. He didn't believe the results so he sent them off to another lab that specialized in these kinds of illnesses. Three weeks later the results came back, confirming the previous lupus diagnosis.
"I guess you do have lupus."
"Ok. Now I have something to blame for how sick I have been. Now...what the heck is lupus? How is it treated?"
Most of those answered were received by all the research that I did leading up to the confirmation.
"We need to start you on plaquenil."
"What is that?" Again, I did a lot of research into what medications were available for treatment this autoimmune illness that I had just been diagnosed with.
Maybe you have just been diagnosed with lupus, and like me, are relieved to finally know what’s wrong. Maybe you are scared, because you don’t know what it really means to have lupus. Maybe you are not sure what to feel. I know I felt betrayed by my body. I felt scared because I thought I had been given a death sentence.
While lupus can be disruptive to everyday life and even be life-threatening, the good news is that, with the correct medication and a healthy lifestyle, many people diagnosed with lupus can look forward to a long and productive life.
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 understanding, acceptance, and coping, while maximizing health?
Questions you should ask your doctor about your lupus diagnosis.
Lupus is a chronic condition that is long-term with periods of activity and then remission. It is characterized by inflammation which starts on a molecular and cellular level eventually entering a level that can be seen by the naked eye. There is no cure for lupus and it is diagnosed based on a combination of symptoms, physical exam findings, and blood test results.
When it comes to lupus, we need to remember that:
- No two cases are alike
- 90% of those diagnosed with lupus are female
- 15% of those diagnosed with lupus are children
- An estimated 1.5 million Americans are diagnosed with lupus
Provision of a comprehensive information booklet is essential at the point of diagnosis.
Analysis of focus groups at the Arthritis Research Facility in the UK revealed three major themes.
- Information about lupus received at diagnosis was scant and difficult to absorb, resulting in feelings of fear and confusion.
- Only a small number of patients received clear and consistent information. In fact, for many the information received was inappropriate, forcing them to find out for themselves which resulted in further distress.
- The final theme reflected that patients would rather be informed of potential problems than kept in ignorance.
There was a unanimous feeling among all participants that provision of a comprehensive information booklet was essential at the point of diagnosis. This booklet would need to contain information about not only lupus itself, but other issues such as lifestyle management, exercise, fatigue, pregnancy advice and genetics, as well as acknowledging the psychological and emotional implications of the disease.
Lupus: the wolf and the disease
Where did the term "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.
Technically, Lupus is the Latin word for “wolf,” but its history and connection with the disease runs a little deeper than that.
Records of symptoms of this disease go back all the way to about 400 BC – 100 AD, but the disease itself was not technically named until the 13th century. The term “Lupus” was coined because of a rash on the face (the butterfly rash) common to many Lupus patients. The rash resembled the bite of a wolf. In the Middle Ages, it is said that some people were even suspicious that victims of Lupus had become werewolves.
Although people do not think of Lupus patients as werewolves any longer, people affected by this chronic illness may still fall victim to the misconceptions of their peers.
I wrote this simple book. It contains essential oil blend that I have used in fight against lupus and other autoimmune illnesses.
In simple terms, what happens with a disease 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.
What is a lupus flare?
When you think a flare is starting, it's best to see your doctor as soon as possible.
The best way to manage lupus and avoid flares is to learn as much about your disease as you can and to follow these simple guidelines: Listen to your body, learn what your own triggers and early warning signs are, stick to your lupus treatment plan, and take good care of yourself.
Are there certain things that will trigger a flare?
It is believed that certain things may trigger the onset of Lupus or cause Lupus to flare. Trigger factors include:
- Ultraviolet (UV) light (This could be from the sun or from light bulbs.)
- Certain prescription drugs
- sulfa drugs, which make a person more sensitive to the sun, such as: Bactrim® and Septra® (trimethoprim-sulfamethoxazole); sulfisoxazole (Gantrisin®); tolbutamide (Orinase®); sulfasalazine (Azulfidine®); diuretics
- sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
- penicillin or other antibiotic drugs such as: amoxicillin (Amoxil®); ampicillin (Ampicillin Sodium ADD-Vantage®); cloxacillin (Cloxapen®)
- Certain antibiotics
- Extreme stress
What can I do to avoid flare-ups?
Flares are an unfortunate part of living with lupus, but lifestyle changes can reduce your risk of flares. Eating a healthy diet, exercising regularly, avoiding stress, and staying out of the sun will help.
Triggers for disease flare-ups vary widely and in many cases can’t be anticipated at all. Many people do find, however, that it helps to avoid being in the sun and to wear sunblock daily, even in winter. It’s also important:
- to get regular sleep
- avoid smoking
- consume a heart-healthy, low-sodium diet
- find stress relief
- exercise regularly
- stay out of the sun
- take sensible measures to avoid bacterial and viral infections.
- take your medications, as prescribed
- be careful with certain foods and supplements.
What are some symptoms that I might expect?
- 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
- 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
- Mouth or nose ulcers lasting longer than two weeks
- swollen lymph glands (small glands found throughout your body, including in your neck, armpits and groin)
- high blood pressure (hypertension)
- headaches and migraines
- stomach (abdominal) pain
- dry eyes
- memory loss
- seizures (fits)
- problems thinking clearly and difficulty telling the difference between reality and imagination () psychosis
- shortness of breath
- Raynaud's phenomenon – a condition that limits the blood supply to your hands and feet when it is cold
- ankle swelling and fluid retention
Why did it take so long to get my diagnosis?
About 1.5 million Americans have lupus and nine out of every 10 are women, according to the Lupus Foundation of America. Surprisingly, in two separate conversations about this autoimmune disease — one with a patient, the other with a specialist nurse — the word most frequently spoken was “unpredictable.”
“It’s a disability that you cannot describe because the whole thing about lupus is it’s so unpredictable,” Mallory Dixon, 29, told Medical Daily.
Systemic lupus erythematosus (SLE) can be difficult to diagnose, as it has similar symptoms to several other, far more common, conditions.
Diagnosis may also be difficult because symptoms can vary greatly from person to person, and they may change over time. For example, there may be periods where your symptoms are not very noticeable, or times when they flare up and become more severe.
Why does it take so long to get a lupus diagnosis?
Are my kids at risk for developing lupus?
Are my children, siblings and other blood relatives at risk for lupus?
While most people with lupus do not have relatives with the disease, there is a genetic component to it that researchers are just now starting to untangle. About 20 percent of people with lupus have a parent or sibling who has the disease (or will develop it). About 5 percent of the children born to a parent with lupus will develop the illness. But while most experts say that genes play a crucial role in the development of lupus, they also contend that a trigger in the environment almost certainly is at play in prompting its progression.
Could another condition be causing my lupus symptoms?
Lupus is an autoimmune disease that affects 1.5 million Americans—90% of whom are women. But diagnosing lupus can be challenging because symptoms tend to come and go in “flares” that are hard to track. There is no one definitive test for lupus. Doctors look at the combination of your symptoms and a series of lab tests to diagnose lupus. Lupus is often called “the great imitator” because it has the same symptoms—including joint pain, fatigue, headaches, rashes, hair loss, inability to concentrate, and swelling—as many other diseases. Here are several conditions that are frequently confused with lupus.
Lupus and overlapping conditions
Lupus is not contagious!
What did I do to get this disease? Is it contagious?
A person can’t catch lupus from someone else. The current thinking is that a mix of hormones and elements in the environment converge to spark lupus in a person who has genes that make him or her susceptible to it.
Lupus and organ involvement
Has the disease already damaged my kidneys or other organs?
Lupus is a complex and challenging disease that can involve any organ system in the body. Some of the organ systems that can be affected by lupus or lupus medications are:
- Central Nervous system (brain and spinal cord)
- Peripheral nervous system
- Ophthalmologic system (eyes)
- Oral system (mouth)
- Dermatologic system (skin)
- Cardiopulmonary system (heart and lungs)
- Renal system (kidney)
- Gastrointestinal system (digestive)
- Reproductive system
- Hematologic system (blood)
- Musculoskeletal system (muscles, joints and bones)
Your doctor will do routine blood work and urinanalysis. These tests should show any organ involvement.
However, please always go to your doctor with a list of symptoms that you may be experiencing. Always let your doctor know of any new issues or symptoms. This will help him to help you better.
Lupus and bone density scanning
Should I have a bone density test?
Studies have found an increase in bone loss and fracture in individuals with lupus. In fact, women with lupus may be nearly five times more likely to experience a fracture from osteoporosis. Individuals with lupus are at increased risk for osteoporosis for many reasons.
To begin with, the steroid medications often prescribed to treat lupus can trigger significant bone loss.
In addition, pain and fatigue caused by the disease can result in inactivity, further increasing osteoporosis risk.
Studies also show that bone loss in lupus may occur as a direct result of the disease. Of concern is the fact that 90 percent of the individuals affected with lupus are women, a group already at increased osteoporosis risk.
Herbal supplements can benefit some people with lupus.
Should I be taking calcium or other supplements?
Is it O.K. to take Nsaid pain relievers?
Many people with lupus take nonsteroidal anti-inflammatory drugs like ibuprofen, naproxen or prescription pills to relieve aches and pains. All carry general risks, like gastrointestinal bleeding. Because they can also cause fluid retention and reduce kidney function, experts generally recommend that patients with lupus who take Nsaids long term have their liver and kidney functions tested every three to four months.
Oral contraceptives and lupus
Is it O.K. to take oral contraceptives?
Is it safe for me to become pregnant, if I have lupus?
Women with lupus face multiple risks during pregnancies, including infections and blood clots. Since more successful pregnancies occur during remissions, experts recommend that women wait to conceive until their disease has been inactive for at least six months. A doctor should help in making this decision.
Routine lupus blood tests
How often should I have checkups?
Your routine tests that will be done will be determined on the symptoms that you are having. It is helpful to have a symptom checker. Fill this out each time before you see your doctor. This will help your doctor to determine what test to do based on your symptoms, as well as how often to schedule your visits.
What lifestyles changes do you recommend?
Take steps to care for your body if you have lupus. Simple measures can help you prevent lupus flares and, should they occur, better cope with the signs and symptoms you experience. Try to:
- See your doctor regularly. Having regular checkups instead of only seeing your doctor when your symptoms worsen may help your doctor prevent flare-ups, and can be useful in addressing routine health concerns, such as stress, diet and exercise that can be helpful in preventing lupus complications.
- Get adequate rest. People with lupus often experience persistent fatigue that's different from normal tiredness and that isn't necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Get plenty of sleep at night and naps or breaks during the day as needed.
- Be sun smart. Because ultraviolet light can trigger a flare, wear protective clothing — such as a hat, long-sleeved shirt and long pants — and use sunscreens with a sun protection factor (SPF) of at least 55 every time you go outside.
- Get regular exercise. Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being.
- Don't smoke. Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
- Eat a healthy diet. A healthy diet emphasizes fruits, vegetables and whole grains. Sometimes you may have dietary restrictions, especially if you have high blood pressure, kidney damage or gastrointestinal problems.
Turmeric is a great anti-inflammatory support for those suffering with lupus. My doctor was very hesitant about me using this until he saw my results.
What is my prognosis and what does the future look like?
The idea that lupus is generally a fatal disease is incorrect. In fact, the prognosis of lupus is better today than ever before. It is true that medical science has not yet developed a method for curing lupus, and some people do die from the disease.
Is lupus fatal?
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.
Will I always have this disease?
This is one question that I asked my doctor and did not like the answer to, honestly.
He answered, "yes" without even a thought. I personally refuse to think that it is incurable, and that is why I am on a quest to find natural remedies, and have been quite successful for the most part.
However, like every lupus case, each person's response to these natural methods is different.
Please, also, let your doctor know that you are using natural remedies, if so. Some herbs can interact with some medications.
What should I work on before my next doctor's visit?
What should I work on before my next visit?
These tips can help you make the most of your appointment.
- Organize your history
- Anticipate what the doctor needs to know
- Track your symptoms
- Know your medications
- Secure your medical records
- Request a verbal summary
- Prepare questions
Building your team of doctors
What do your other lupus patients do for their treatment?
Remember that every lupus patient and case is different, but it doesn't hurt to ask the doctor what others might be using to treat themselves.
Diagnosing and treating lupus often require a team effort between the patient and several types of health care professionals. Most people will see a rheumatologist for their lupus treatment. A rheumatologist is a doctor who specializes in rheumatic diseases (arthritis and and other inflammatory disorders, often involving the immune system). Clinical immunologists (doctors specializing in immune system disorders) may also treat people with lupus. As treatment progresses, other professionals often help. These may include nurses, psychologists, social workers, nephrologists (doctors who treat kidney disease), cardiologists (doctors specializing in the heart and blood vessels), hematologists (doctors specializing in blood disorders), endocrinologists (doctors specializing in problems related to the glands and hormones), dermatologists (doctors who treat skin disease), and neurologists (doctors specializing in disorders of the nervous system). It is also important for people with lupus to have a primary care doctor—usually a family physician or internist (internal medicine specialist)—who can coordinate care between their different health providers and treat other problems as they arise.
Right now my team consist of:
- Primary Care Physician
- Audiologist (ENT)
How many patients like me have you treated?
This is a good question to ask. You want to make sure that your doctor is familiar with your disease, or should refer to someone who is.
Make sure your doctor is familiar with your disease.
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.
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.
Lupus is not......
Why do I get so tired with lupus?
A majority of patients with lupus identify fatigue as one of their primary symptoms, yet the causes of fatigue vary from person to person.
Several important factors have been found to be associated with fatigue such as:
- Poor sleep quality
- Not Enough Sleep
- Sleep apnea
- Not enough, or improper fuel
- Too much caffeine
- Possible urinary tract infection
- Heart disease
- Work shifts
- Food allergies
- Chronic fatigue syndrome
- Vitamin D deficiency
- Reduced physical activity
- Vitamin B12 deficiency
Your doctor can perform simple blood test to determine vitamin deficiencies. I now take 50,000 I.U.s of Vitamin D weekly, a B12 shot monthly, iron infusions weekly (or as determined by the helatologist).
When people die from lupus what exactly do they die from?
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.
What tests are done to determine a lupus diagnosis?
Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may vary over time and overlap with those of many other disorders. No one test can diagnose lupus. The combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis.
Blood and urine tests may include:
Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
- Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease. It may be elevated if you have lupus, another inflammatory condition, cancer or an infection.
- Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
- Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
- Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies — produced by your immune system — indicates a stimulated immune system. While most people with lupus have a positive ANA test, most people with a positive ANA do not have lupus. If you test positive for ANA, your doctor may advise more-specific antibody testing.
If your doctor suspects that lupus is affecting your lungs or heart, he or she may suggest:
- Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs.
- Echocardiogram. This test uses sound waves to produce real-time images of your beating heart. It can check for problems with your valves and other portions of your heart.
Lupus can harm your kidneys in many different ways, and treatments can vary, depending on the type of damage that occurs. In some cases, it's necessary to test a small sample of kidney tissue to determine what the best treatment might be. The sample can be obtained with a needle or through a small incision
Know your treatment options.
What are my treatment options?
Treatment for lupus depends on your signs and symptoms. Determining whether your signs and symptoms should be treated and what medications to use requires a careful discussion of the benefits and risks with your doctor. As your signs and symptoms flare and subside, you and your doctor may find that you'll need to change medications or dosages. The medications most commonly used to control lupus include:
- Nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter NSAIDs, such as naproxen sodium (Aleve) and ibuprofen (Advil, Motrin IB, others), may be used to treat pain, swelling and fever associated with lupus. Stronger NSAIDs are available by prescription. Side effects of NSAIDs include stomach bleeding, kidney problems and an increased risk of heart problems.
- Antimalarial drugs. Medications commonly used to treat malaria, such as hydroxychloroquine (Plaquenil), also can help control lupus. Side effects can include stomach upset and, very rarely, damage to the retina of the eye.
- Corticosteroids. Prednisone and other types of corticosteroids can counter the inflammation of lupus but often produce long-term side effects — including weight gain, easy bruising, thinning bones (osteoporosis), high blood pressure, diabetes and increased risk of infection. The risk of side effects increases with higher doses and longer term therapy.
- Immunosuppressants. Drugs that suppress the immune system may be helpful in serious cases of lupus. Examples include azathioprine (Imuran, Azasan), mycophenolate (CellCept), leflunomide (Arava) and methotrexate (Trexall). Potential side effects may include an increased risk of infection, liver damage, decreased fertility and an increased risk of cancer. A newer medication, belimumab (Benlysta), also reduces lupus symptoms in some people. Side effects include nausea, diarrhea and fever.
- Natural Remedies are not typically an option, but is one I feel you should discuss with your doctor. If your doctor is open, he will listen.
How long will I need to take these lupus drugs?
Your doctor will determine how long you will be on the drugs that are prescribed for you and your lupus case.
What are the possible side effects of my lupus medications and could they trigger or aggravate my lupus symptoms?
Medicines can't cure lupus, but they can control many symptoms and often can prevent or slow organ damage.
Medicine treatment for lupus often involves reaching a balance between preventing organ damage, having an acceptable quality of life, and minimizing side effects. You will need to see your doctor often to see how you're doing and check for medicine side effects.
Check out your natural treatment options.
Are there alternative medicine that I could consider?
Sometimes alternative or complementary medicine may benefit people with lupus. However, these therapies are usually used with conventional medications. Discuss these treatments with your doctor before initiating them on your own. He or she can help you weigh the benefits and risks and tell you if the treatments will interfere with your current lupus medications. My PCP was not very open about the use of herbal therapies, but he saw the results that I was getting, he gave in.
Complementary and alternative treatments for lupus include:
- Dehydroepiandrosterone (DHEA). Supplements containing this hormone have been shown to reduce the dose of steroids needed to stabilize symptoms in some people who have lupus.
- Fish oil. Fish oil supplements contain omega-3 fatty acids that may be beneficial for people with lupus. Preliminary studies have found some promise, though more study is needed. Side effects of fish oil supplements can include nausea, belching and a fishy taste in the mouth.
- Vitamin D. There is some evidence to suggest that people with lupus may benefit from supplemental vitamin D.
- Essential oils such as frankincense essential oil
- Various Herbs
- Bone broth
- Collagen protein powder
- Fermented foods
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Natural treatments for lupus
Where can I get support for dealing with lupus?
If you have lupus, you're likely to have a range of painful feelings about your condition, from fear to extreme frustration. The challenges of living with lupus increase your risk of depression and related mental health problems, such as anxiety, stress and low self-esteem. To help you cope with lupus, try to:
- Learn all you can about lupus. Write down all the questions you have about lupus and ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you'll feel in your treatment choices.
Learn as much as you can about the condition so that you can recognize 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.
- Gather support among your friends and family. Talk about lupus with your friends and family and explain ways they can help out when you're having flares. Lupus can be frustrating for your loved ones because they usually can't see it, and you may not appear sick. They can't tell if you're having a good day or a bad day unless you tell them. Be open about what you're feeling so that your friends and family know what to expect.
- Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you.
- Connect with others who have lupus. Talk to other people who have lupus. You can connect with other people who have lupus through support groups in your community or through online message boards. Other people with lupus can offer unique support because they're facing many of the same obstacles and frustrations that you're facing.
© 2016 Gina Welds Hulse