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Why Lupus is Misunderstood and Misdiagnosed

Updated on May 23, 2013

Butterfly Rash

Butterfly Rash Caused by lupus and discoid lupus.
Butterfly Rash Caused by lupus and discoid lupus.

Over view of Lupus

WHAT IS LUPUS

Lupus is a mysterious disease, baffling the medical profession for over a century now. Trying to understand how a person comes into contact with such a disease has become the focus upon researchers. Under the microscope, scientist are trying hard to find out how it affects the body in ways that cause mild to moderate to severe damage on upon its own body. This includes death. There are several foundations out there across the U.S. nation, one, the Lupus Foundation of America and the other is the Alliance for Lupus Research. They are pulling together with these scientist and with the medical profession to realistically find medications that will give hope of slowing down the damage of this disease during "flares" as well as finding a cure.

Lupus is an auto-immune disease. This means, that your own body is attacking itself. The immune system becomes confused, thus causing it to attack the body with no mercy.

In a small over view, the body normally produces antibodies that in return protect us when a virus or bacteria ,thus attacking this and fighting it off. A person that has Lupus; their immune system attacks everything. It over reacts at this stage and can not tell the difference between a virus, or bacteria to healthy tissues in the body. I call this a monster with in. Lupus is sometimes confused with Aids/HIV, but they are nothing a like and Lupus does not do what Aids/HIV does to the body's immune system.

Lupus is a disease that when attacking its own body, causes mild to severe inflammation throughout the areas of the body. This inflammation can be secluded to one area, or many areas. In return, with inflammation there is pain, damage to tissue, joints, organs, bones and other various areas of the body.


WHAT TRIGGERS LUPUS AND THE FLARES THAT COME WITH LUPUS

There are many triggers to lupus that those who have this disease, know they must avoid these things in order to keep the disease under control, or in remission. Lupus has been proven that even those that carry the genetic gene to lupus, lupus must be triggered to onset the disease in the body. Those factors are with in the environment a person is exposed to. These triggers are listed below, but others may apply, since no one person is a like.

  • Sunlight and UV/Fluorescent light exposure
  • Stress
  • Pregnancy
  • Injury
  • Infections
  • Certain types of dark Vegetables
  • Smoking
  • Sweeteners
  • Sugar
  • Caffeine
  • Grains
  • Red Meats
  • Mold/Mildew
  • Chemicals and Cleaners
  • Prescription drugs
  • Garlic
  • Immune System boosters

Lupus gives little notice of its attacks, but those that have lived with lupus and their diagnosis most of their lives, know when and why they can feel a "flare" coming into on.


MEDICATIONS FOR LUPUS

In the past, many people living with lupus died from the complications of lupus and the medications doctors used to help relieve the flares. Now a days, reseach and medications have helped those with lupus to live longer lives. Researchers just recently have come out with a new medication to help control lupus. This new medication is the first in over 50 years just for lupus. There are many other medications used to help with the flares of lupus, but most medications have side affects that no one person would wish upon their worst enemy. Some of these treatments listed below are those used in some way or another to control the flares of lupus.

  • Prednisone (Steroids)
  • Chemotherapy
  • Benlysta (The new drug passed by the FDA for Lupus)
  • Plaquinel (antimalarial medication)
  • NSAIDS/IB Prophen (Anti-inflammatory)
  • Cytoxon
  • Imuran
  • Cellcept
  • Methotrexate
  • There are also Vitamins that your doctor may prescribe, or suggest.

There is hope of lupus going into remission, but to be considered remission, you must not have any symptoms and be off of all medications.


LUPUS IS NOT A BIAS DISEASE

Lupus is found primarily in women. Why you ask, because it has been found that hormones are a factor to our immune systems and women have higher estrogen levels than men, but this does not exclude that men from developing lupus. Results prove though, that women will be diagnosed nine out of tens times more than men. This disease is not gender bias, nor racial bias, but is commonly found in people of African, Asian, Hispanic/Latino, American Indian, or Pacific Island descent. This does not mean, that if you are of another race not mentioned above, that you are excluded from the possibility of developing lupus. Like I said, Lupus is not racially bias.


A FAMILY CONNECTION TO LUPUS

In the past lupus was not linked to genetics, but now lupus has been linked to famiy history. Researchers are having a hard time though pin pointing what bio markers are specific for the traits to lupus. On occasion you will find a person that has lupus and has no genetic tie to family members, but in most cases, they have now related genetic factors to lupus. There is one break through on a trait in ones body that contributes to lupus. This is a protein they have found called Osteopontin, this protein marker plays and important role in tissue repair and inflammation. Presently lupus is misdiagnosed, but in the past it was even more poorly noticed by our medical professionals. People with lupus, if they look into their family history, they will find that family members would have had various diseases that had no relevant causes. Doctors would treat the diagnosis, yet not look further into the underlining cause of what was occurring . It is said, that those diagnosed with lupus, should look further into their family history. They may find out which side of the family had various unexplained illnesses, or diseases, which made life more difficult than usual.


TESTING/SYMPTOMS THAT CAN CONFIRM A LUPUS DIAGNOSIS

Most people with Lupus find themselves with several other diagnoses prior to the actual diagnosis of lupus. Many people that have this disease feel like they are going crazy. Their doctors sometimes even treat these people as if they are over exaggerating, drug seeking, or have underlining psychotic issues. The bad thing is, lupus has a tendency to cause other auto-immune disease diagnosis's. These may follow, or you may already have been diagnosed with some prior to your lupus diagnosis.( Fibromyalgia, Neuropathy, Endometriosis, Raynaud's, Irritable Bowl Syndrome (IBS),Arthritis, and Osteoporosis. There are a total of 180 different auto-immune disease's, but there are a little over 80 that are known.)

No one test can conclude Lupus, but doctors use several tests, such as these when diagnosing lupus. You can expect your doctor to perform several, if not all testing below.

  • Complete blood count
  • Erythrocyte sedimentation rate (ESR) (an elevated ESR indicates inflammation in the body)
  • Urinalysis
  • Blood tests to check your kidney and liver function
  • Complement test (a blood test that measures severity of infection)
  • Antinuclear antibody test (ANA) (positive in most lupus patients)
  • Other antibody tests
  • Syphilis test (may be falsely positive in people with lupus)
  • Skin or kidney biopsy
  • TB Testing (may be falsely positive in people with lupus)

An Anti-body test (ANA), and a titer level test, can to help confirm a diagnosis of lupus. Some doctors will use other testing to rule out other diseases prior to making a diagnosis of lupus, this is very commone. Doctors will then link these tests with medical symptoms that are associated with the disease. These tests are the reason why lupus is misdiagnosed, and misunderstood in the medical profession. The tests can be negative, yet an individual may have numerous symptoms that link them to lupus. Remember this, lupus does not always show itself, especially in blood testing. There is a list of symptoms that medical professionals follow to diagnose lupus, if testing fails. According to the list of symptoms, a person must meet at least 11 of those areas in order for lupus to be considered as a diagnosis. A lot of the older doctors base the testing as a god given, and will refuse even with symptom evidence to diagnosis lupus. If the blood testing comes back negative, older doctors will state that you don't have lupus. That is why so many people with lupus live with the pain, the unknown and with out treatment.

  • Anemia
  • Vitamin Deficiencies
  • Changes in weight (rapid weight loss or gain)
  • Fatigue (Tired all the time, even with enough sleep)
  • Unexplained Fevers
  • Hair loss (rapid hair loss, and bald spots)
  • Heart problems (inflammation of the heart)
  • Inflammation of blood vessels
  • Joint pain
  • Bone loss
  • Butterfly Rash (Red rash cross the bridge of the nose and cheeks)
  • Sun Sensitivity/Fluorescent Light Sensitivity
  • Muscle pain
  • Mental health problems (Memory loss, Depression, Anxiety, Mood Swings)
  • Nervous system symptoms (Neuropathy)
  • Raynaud’s phenomenon (circulatory issues in the hands and feet, cold hand and feet)
  • Skin problems
  • Swelling of the hands and feet
  • Swollen glands
  • Kidney problem (infections, renal failure)
  • Lung Issues (Pleurisy)
  • Vision Issues (Rapid loss in vision, glaucoma, bleeding of the retina)
  • On going infections (infections that last for long periods, or keep coming back)
  • Other auto-immune disease diagnoses


TYPES OF LUPUS

There are also several types of Lupus. All types of lupus attack the body, some moderate to severe, but any type of lupus diagnosis can be unruly and needs to be watch closely by medical professionals. The attacks on the body from lupus, can be devastating to the person diagnosed, as well as to their family and a persons social networks. A person diagnosed with lupus may feel alone, or withdrawn. This is because society knows very little about this disease. Those around them may think they are exaggerating on the pain they are feeling. Other's may say, "You don't look sick!" A person with lupus may endure a break down in their support system due to misunderstandings linked around this disease. The more you educate yourself on this disease, and educate others, the better the community, family, friends and organizations will pull together to support you. If others refuse to understand what a person goes through with lupus, take in informational pamphlets, or print off information from the internet. Leave this information lying around for others to read. Don't be afraid to answer questions when others ask about the disease. It is your voice that is heard and can inform so many others. Below are some of the most common types of lupus. There are other rare conditions to lupus.

Systemic lupus erythematosus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can affect any part of your body, and can be mild or severe. The medical profession calls this (SLE) for short terms. SLE is the most severe type of lupus.

Cutaneous lupus erythematosus is limited to your skin. Although cutaneous lupus can cause many types of rashes and lesions (sores), the most common kind is raised, scaly and red, but not itchy; it is called a discoid rash. This is due to the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is the rash on the cheeks and across the bridge of the nose, known as the butterfly rash. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus. This type of lupus scars the skin and will ruin the hair follicles, making hair loss permanent. CLE affects the body and joints just like SLE and those that have CLE may never develop SLE, but that does not mean it won't happen. CLE may stay secluded to the skin, and upper area of the body causing scaring and disfigurations. 10% of people that have CLE, may develop SLE, or the medical professional may state, you had SLE and was diagnosed with CLE first. This is common upon diagnoses.

Drug induced lupus is caused by prescriptions drugs and normally goes into remission once the person is taken off the drug.

Neonatal lupus is a rare condition that affects babies of women who have lupus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but all of these symptoms go away completely after several months with no lasting effects. A very small percentage of babies with neonatal lupus may also have a serious heart defect; however, most babies of mothers with lupus are entirely healthy.


PREGNANCY AND LUPUS

People with any type of lupus need to be closely watched during pregnancy and considered "High Risk". Having regular doctor visits is a must with and woman that plans on getting pregnant, or has just found out she is pregnant. There are many complications that can harm the fetus, or the mother, if the mother has lupus. These are things to consider and risks to know about during a pregnancy in a woman who has lupus, or lupus is trigger during the pregnancy.

Your lupus should be under control or in remission for at least six months prior to getting pregnant. Getting pregnant when your lupus is active could result in miscarriages, stillbirth, or other serious problems.

There are certain groups of women with lupus who are at a very high risk. This could mean danger for the mother and the fetus. These dangers may include women who have a very high pulmonary hypertension, lung disease, heart failure, chronic kidney failure, kidney disease, or a history of preeclampsia. This also may include women who have had a stroke, or a lupus flare within the past 6 months prior to the onset of their pregnancy.

Most pregnancy's in women that have lupus, delivery healthy full term babies. Having lupus does not mean there will be problems, but like I said previously, all pregnancies in those that have lupus need to consider their pregnancy "high risk".


PAY ATTENTION TO YOUR BODY

Scientists and Doctors may not understand why Lupus attacks the way it does, but there are ways to help control this disease. No one person is the same. One treatment may work for an individual, while another treatment may cause more of what the doctors call a "flare up". Pay attention to side affects the medications can cause and the most importantly, pay attention to your body. If it does not feel right, then it is not right!

Therefor, if you think you have lupus, or have been diagnosed with lupus, journal your symptoms daily. Talk to your doctor regularly, if he/she is clueless about this disease, ask them to do their homework. Then ask them to refer you to a doctor in your area, that is familiar with this disease. Also, when in doubt, and a doctor won't listen to you, get a second, third, forth opinion. This is your body, you know it better than anyone. You know what is happening to you! Don't tell any doctor that your looking for a second opinion, or third, just talk to them about what is happening to you. Show them your journal. It may be a slow process, but it will be well worth the time to find out the truth on what is actually happening to your own body. Know your not alone. Know there are millions each year suffering from this debilitating disease, who also threw many doctors to find out what was happening to them. Here are some specialists that deal with lupus and know how it affects the body. Some of these doctors below specialize in lupus.

  • Rheumatologist
  • Dermatologists
  • Allergy Clinics
  • Orthopedic Doctors

My statement to many, "What doesn't kill you makes you stronger". Do your research on lupus, and other various disease that lupus may imitate. Don't stop until you get answers. If you fight back, even if lupus knocks you down, get back up, this is showing you, that you want to fight. This too shows that no one can take you away from you. Your not crazy, you are sick. Whether or not others believe this, should only drive you to find out more. All you need to know is there are millions out there just like you, that go threw this on a daily basis too, YOU ARE NOT ALONE.


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    • profile image

      Rebecca 3 years ago

      I would like to say that doctors kept telling me I could have a normal healthy pregnancy and I did not. They ignored my small cold for what it was and I ended up with an almost deadly flare. Never trust a doctor who tells you there will probably be a normal healthy delivery. Beware for yourself. Watch any and all colds, swelling, rashes and so on! When you deliver and your hormones kick into play you could have a bad, bad flare.

    • profile image

      Angela 3 years ago

      I was diagnosed with lupus in 2002. I changed doctors this year due to my doctor retiring and the new doctor ran my blood work again and every thing was negative. My ANA was negative. My double stranded DNA was negative. My anti Sm was negative. And my inflammation was within range. Based on theses test the new doctor said that he 99.5 percent sure I don't have lupus. Now what?

    • profile image

      amanhowliveswithapersonthatthinksshehaslupus 3 years ago

      May be your just over reacting?

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      Cindy 2 years ago

      I was told the same thing by my doctor of many years.I had all of the same test but i did have it she told me time and time again that it was not present I broke out with a bad rash all over and again she said it was not lupus .so I decide to go to a dermatologist and he did a biopsy and it came back that it was lupus .I am changing my doctor and looking to see if there's any thing else i can do.

    • Susan Trump profile image

      Susan Trump 2 years ago from San Diego, California

      In most of my hubs I compare the symptoms of other disease, including lead poisoning, to those of lupus. It is easily misdiagnosed. I'm also studying the leaky gut issue and finding that most people with auto-immune issues have a leaky gut. Which is the chicken and which is the egg is unclear, but my money is on the gut causing the auto-immune issues. In any case, cleaning up the gut is key to living without the symptoms you outline. Thanks for writing.

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