Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Systemic Lupus Erythematosus

What is Systemic Lupus Erythematosus?

Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disorder.  It damages skin, joints and/or organs in the body due to swelling, pain, and inflammation. In this disorder, the body attacks itself and it cannot distinguish between foreign cells and the patient’s own healthy cells. Affected individuals can alternate from extreme flare-ups to periods of remission. SLE affects almost every organ in the body-- the heart, lungs, kidneys and skin are the primary affected organs.

 

Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disorder.  It damages skin, joints and/or organs in the body due to swelling, pain, and inflammation. In this disorder, the body attacks itself and it cannot distinguish between foreign cells and the patient’s own healthy cells. Affected individuals can alternate from extreme flare-ups to periods of remission. SLE affects almost every organ in the body-- the heart, lungs, kidneys and skin are the primary affected organs.

Acknowledgement of Systemic Lupus Erythematosus has not been added yet.

There are approximately 5 million individuals who are affected worldwide and 16,000 new cases reported annually. In America, 1.5 million Americans have some form of lupus and many are of African American or Asian descent. It is more prevalent in women of childbearing age, but men, children and teenagers can develop it too. The most common age range is 15 to 44 years old. Most affected individuals have another autoimmune disease.

Synonyms for Systemic Lupus Erythematosus has not been added yet.

Many affected individuals with SLE have family members with autoimmune diseases. There are also a combination of factors that can cause SLE: hormones, genetics, and environmental triggers.

 

Hormones are required to regulate and send messages to other parts of the body. Women have more estrogen than men. and estrogen enhances the immune system. This is thought to be one reason why autoimmune diseases are more prevalent in women.

 

Genetics also play a role in lupus. There are many genes that have been identified and related to the development of lupus. Major histocompatibility complex (MHC) genes class II and III are known to be associated with lupus. These genes help regulate immune responses to foreign invaders. Lupus patients have low complement proteins. Other genes that play a role in complement protein receptors and antibody receptors are associated with lupus as well. Genetic studies also implicate tumor necrosis factor-alpha and interleukin-10. Genes that code for Fcy-receptors are associated with lupus nephritis in the kidneys.

 

Environmental factors have been linked to lupus. Toxins, such as cigarette smoke, silica, and mercury, and infectious diseases, such as infectious mononucleosis, shingles and cytomegalovirus (CMV) may also be contributing factors.

 

Drug induced SLE is caused by these drugs: procainamide, quinidine, minocycline, hydralazine, isoniazid, methyldopa, propylthiouracil, methimazole, terbinafine, and anti-TNF agents.

SLE can range from mild to severe symptoms. The symptoms can come and go, and affects different and several organs. The most common symptoms of SLE are:

  • Butterfly-shaped rash on the cheeks and nose

  • Headaches or migraines

  • Painful and swollen joints

  • Inflammation

  • Fever

  • Extreme fatigue or tiredness

  • Swelling of the feet, hands, legs, and arms

  • Puffy eyes or swollen eyes

  • Anemia

  • Chest pains

  • Photosensitivity

  • Hair loss

  • Blood clots

  • Raynaud’s syndrome or the fingers turning white or blue

  • Ulcers in the mouth or nose

Lupus is commonly manifested as arthritis, but lupus nephritis (lupus in the kidney) occurs in half of affected individuals.

An affected individual is diagnosed with lupus through a clinical exam by a doctor. Lupus cannot be diagnosed based on lab tests alone. The doctor must assess the individual’s symptoms, lab tests, personal medical history, and family medical history.

 

In general, a diagnosis of lupus requires at least four of the following symptoms or characteristics:

  • Butterfly rash

  • Skin rash

  • Photosensitivity

  • Mouth or nose ulcers

  • Arthritis

  • Cardio-pulmonary involvement -- inflammation around the heart and/or lungs

  • Neurologic disorder – seizure or psychosis

  • Kidney disorder

  • Hematologic (blood) disorder

  • Immunologic disorder
  • Antinuclear antibodies (ANA) positive

 

The healthcare provider can give affected individuals some lab tests to determine if the person has SLE or another condition with similar symptoms. There are several things in the body that can change if the person has lupus. There can be signs of swelling/inflammation indicating that the immune system is overworking. Complete blood cell count (CBC), autoimmune antibody tests, blood clotting analysis and complement tests are commonly performed.  Specifically, positive antinuclear antibody (ANA), positive anti-single stranded DNA (anti-ssDNA) positive anti-double stranded DNA (anti-dsDNA), positive anti Sm, positive antiphospholipid antibodies, low complement (C3, C4, CH50), and elevated acute phase reactants (ESR, CRP) are detected.  Other tests can be performed to assess organ health, such as kidney function or urine tests, or tissue biopsies.

Affected patients may consult a team of healthcare professionals--  doctors, nurses, physical therapists and other specialists. The autoimmune disorder ranges from mild to life threatening disease. However, with appropriate treatment, most lupus patients live full lives.

 

The focus of lupus treatment is symptom management and improving quality of life because there is no cure. Comprehensive lupus care prevents the immune system from attacking the body, protecting organs from damage by the condition or drug treatment.  

 

Non-drug treatments such as rest, exercise and smoking cessation are highly recommended. Affected individuals should avoid prolonged exposure to the sun and protect their skin with sunscreen.

 

Most affected individuals with mild to moderate symptoms can be managed with a Non-Steroidal Anti-Inflammatory Drug (NSAIDs), such as ibuprofen or naproxen. These medications are available by prescription or over-the-counter. Doses should be consulted with a doctor because NSAIDs can affect the heart, the kidney, and the gastrointestinal tract when dosed inappropriately.

 

Steroids can be used, but long term use is not recommended. Affected individuals should use a combination of other drugs to decrease exposure to steroids. Steroids can have many side effects, such as increased blood pressure, increased blood sugar, weight gain, osteoporosis, fluid retention, and mood changes. The use of steroids start at a high dose and require a gradual decrease to a lower maintenance dose.

 

Anti-malarial agents are commonly used in SLE. They can reduce inflammation, pain, blood flow, fatigue, and fever. Hydroxychloroquine is preferred because it has the least side effects. Some side effects include headache, nausea, upset stomach, and vision changes at high doses.

 

Cytotoxic agents are reserved for individuals that have severe SLE with a lot of flare-ups. Mycophenolate mofetil (CellCept) is the most company cytotoxic agents used in SLE, others are cyclophosphamide and azathioprine, and cyclosporine.

 

Intravenous biologic infusions, such as with Benlysta, can be used in individuals with failed oral drug therapy.

It is important for affected individuals to take measures to manage and prevent flare-ups. Awareness of medication side effects are also important. If he/she is experiencing side effects, it is best to let the doctor know so that the medication can be changed or decreased in dose. Many SLE individuals state that the flare-ups, pain and fatigue can impact daily life.

Tips or Suggestions of Systemic Lupus Erythematosus has not been added yet.
  1. Lupus Foundation of America. https://www.lupus.org/. Accessed February 25, 2019.

  2. Lupus LA. http://lupusla.org. Accessed March 5, 2019.

  3. The Johns Hopkins Lupus Center. www.hopkinslupus.org. Accessed March 1, 2019.

Bowel Problems Created by Kat201
Last updated 24 Nov 2010, 11:06 PM

Posted by Kat201
24 Nov 2010, 11:06 PM

Hi Jacquie I think you might be right. Wheat based products do tend to make things worse. I once cut all processed food out of my diet for about a month, it was much like the atkins diet, I felt fabulous. I then started to introduce new things starting with wheat.Tto my suprise this made no difference however when I introduced milk I was immediately ill. I saw a specialist who said I was lactose intolerent I now try to avoid lactose which is difficult when you are on so much medication. I still think there is a link to wheat though i'll give it another go and see if it helps. Katrina x

Posted by Jacquie
24 Nov 2010, 04:52 AM

Hi Katrina Something that can cause abdominal pain (especially from when you are young and getting worse as you get older) is an allergy to gluten. i.e. wheat and other "flours" If you have it bad it is called Celiac disease but some people are not allergic just sensitive to it. You can't eat anything with wheat, rye, barley, oats(unless they are marked gluten free) More and more people are discovering that they have a problem with gluten and more places are carrying gluten free products. e.g. rice or bean flour breads, pasta etc. I get a lot at health food stores but regular grocery stores are carrying some things now too. There has a big increase in the last two years. Even many restaurants have gluten free items e.g. pizza & pasta/ I found a book in the library by a young woman who sounded like what you say you are going through. Her book tells how to go about becoming gluten free. It is amazing how many things have wheat in them. e.g. gum, ketchup, popsicles, At my doctor's suggestion, I have gone without gluten for two years now and it has been a big help to me to control my steroid induced diabetes with no medicines. Jacquie

Posted by Kat201
23 Nov 2010, 03:31 PM

Hi Jacquie I've always been like that since I was a child however it hasn't gone away and is becoming much worse. Not opening my bowels for weeks and then not having any control of my bowels when I have to take copious amounts of laxatives. The abdominal pain is becoming quite unbearable. It may be something else not connected to the lupus so they have agreed to me having a general anaesthetic to investigate. The problem is lupus does tend to get the blame for everything. I'll let you know how I get on. Katrina x

View Full Thread (6 more posts)
prednisone Created by Jacquie
Last updated 13 Jul 2008, 06:48 PM

Posted by Jacquie
13 Jul 2008, 06:48 PM

If you have to take prednisone to control the Lupus, how low a dosage will be effective? When taking Hydroxyquine & Methotrexate I had a flare of Lupus which caused me to have Shrinking Lung Syndrome and I lost half the capacity of my lungs. A combination of Prednisone and Immuran have settled everything down but I am having side effects from too much prednisone.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Lupus Foundation of America

The Lupus Foundation of America, Inc. (LFA) is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus.

03/20/2017
Lupus Canada

Formed in 1987 through the association of Canadian lupus organizations, Lupus Canada was federally registered as a non-profit charity in February 1988 and incorporated in March 1989 with the objectives of encouraging cooperation among the lupus organizations in Canada and promoting public awareness and general education about lupus.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

Spouse of individual suspec...
I am a 30 year old with 2 c...
I have
<p>I was diagnosed in 1998 ...
I live with my husband and ...
Diagnosed with UCTD a few m...
My sister, Judy Davis, died...
I'm a Private Caregiver wit...
Recently became ill. ? of ...
recently dx with Factor V l...
Diagnosed in 2002. 2006 co...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Bowel Problems

Created by Kat201 | Last updated 24 Nov 2010, 11:06 PM

prednisone

Created by Jacquie | Last updated 13 Jul 2008, 06:48 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.