T cells are important components of the immune system, but also of autoimmune disease. Regulating T cells is a potential key to reducing symptoms of lupus.

We’re glad you’re part of the LupusCorner community! Looking for additional resources or an in-person support group?

For many people, having lupus can be an isolating and scary proposition. Your friends and loved ones may not understand what you are going through. Life with an invisible illness can be tough. Connecting with other people that understand can make it easier.

In the United States

The Lupus Foundation of America – Local Chapters

• With over 20 local chapters across the country, the LFA is a great option for in-person support in your area with unique programs
  • The Lupus Foundation of Southern California offers 2 free support meetings every month for lupus patients, family, and friends
• In addition to in-person support groups, the LFA offers location-specific news and events
• LFA local chapters are familiar with rheumatologists and other clinicians near you. They can help you assemble the right lupus treatment team
• LFA also has online forums

 

Lupus Foundation of New England

• Includes in-person and over-the-phone lupus support groups
• Local events, like educational symposiums, to get connected with other Lupus Warriors and learn ore about lupus

 

Kaleidiscope Fighting Lupus

• Operating local chapters in:
  • Portland, OR
  • Star Valley, WY
  • Nashville, TN
  • Springfield, MA

 

The Hospital for Special Surgery – in New York; programs include:

• LANtern – Lupus Asian Network
• LupusLine
• Charla de Lupus – Spanish-speaking support for teens, young adults, and parents

Ask at your own hospital!

 

Lupus LA

Provides a range of patient services near Los Angeles, CA including conferences, support groups, emergency grants, and summer camp for kids.

• In-person support groups in:
  • Sherman Oaks
  • Alhambra
  • Irvine
  • Crenshaw
  • LA – for Spanish speakers
  • on the UCLA campus
  • Rancho Cucamonga
  • Baldwin Park
  • Long Beach

 

In the United Kingdom

Lupus UK – Regional Groups

• 19 Regional groups spread throughout the UK

 

Online

LupusCorner for iPhone and for Android is designed for life with lupus. It includes:

• easy symptom tracking
• medication management tools
• community forum
• access to the newest LupusCorner content

 

Lupus Research Alliance

• Great information on current research into lupus
• Includes support group channels and community features

 

Lupus Chick

PatientsLikeMe

Known as “The Great Imitator,” getting a lupus diagnosis can be frustrating. It involves reviewing laboratory tests, symptoms, and family history.

When you’re not feeling well, you want to know what the cause is. Unfortunately, it is not uncommon for the lupus diasgnosis process to take months or years as doctors evaluate the web of symptoms that are associated with this complex disease.

Any physician can diagnose you with lupus including your primary care provider (PCP), hospitalists, or pediatricians. However, rheumatologists are experts in diagnosing and treating autoimmune diseases such as lupus.

LupusCorner conducted a poll of 119 Lupus Warriors about the lupus diagnosis process. More than 1/3 reported seeing 6 or more doctors before getting a diagnosis. Only 14% reported getting a diagnosis from their original doctor.

While this may suggest that seeing more doctors will hasten your diagnosis, keep in mind that there are complexities with changing clinicians. Each new doctor will need to conduct a thorough review of your current and past symptoms. Medical records are still not always quickly or effectively shared between hospital systems. And, it may result in redundant laboratory tests which can be costly.

You know you’re not alone — though it sure can feel like it sometimes. Let’s look at some lupus facts!

Learn lupus facts about the prevalence of the disease and important differences for people of different ages and races.

1.5 Million Americans have lupus according to estimates by the Lupus Foundation of America, with 16,000 new cases reported annually. That means that about 1 in 200 people in the United States has the disease. Worldwide, the LFA estimates that at least five million people may have some form of lupus. Of the people diagnosed, 70% of lupus cases are systemic lupus erythematosus (SLE). Cutaneous lupus, which affects only the skin, and drug-induced lupus, where symptoms are only present when certain medications are taken, each account for 10 percent of lupus cases.

However, prevalence can be hard to estimate and the actual number of people diagnosed with lupus is considerably fewer. The CDC reports that new diagnosis statistics are not available as it is not required for doctors to report cases of lupus. The previous CDC estimates were that between 161,000 and 322,000 people have lupus in the United State of America.

What difference does sex make?

You may have heard lupus referred to as a woman’s disease. While this is not true (both men and woman can develop lupus), 90% of people diagnosed with the disease are women. This number is consistent, if not perfectly mirrored, in studies done in the United States and in the United Kingdom. The UK study suggested that females are seven times more likely to have lupus than men; a version done in the United States revealed a broader range, with women being six to ten times more likely to develop lupus.

And what about age?

A study published in 2014 examined medical records from 1,898 Chinese, lupus inpatients from 15 hospitals. The patients were categorized by their age at the onset of symptoms. Based on this study, patients were most likely to develop onset between the ages of 18 and 45.

Age of Onset	≤18	>18 and ≤45	>45
Number of Patients	259	1444	195
% of Patients	13.6%	76.1%	10.3%

While additional research is necessary, there were noted differences in the disease depending on the age at which it developed. Of note, it was found that when symptoms appeared later in life, their were higher comorbidities (the simultaneous presence of multiple chronic diseases).

Race and ethnicity?

There does seem to be an impact of race and ethnicity on both the development of lupus and the prognosis. Lupus is 2 to 3 times more prevalent among women of color as compared to Caucasian women. This includes African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians, and other Pacific Islanders. An analysis of hospital and mortality records also concluded that African Americans have a 2 to 3 times higher lupus mortality risk than Caucasians. The authors of the study suggest that this is due to a lupus-specific biological factor.

It can be hard enough to remember what you ate for lunch yesterday. Relying on memory for tracking lupus isn’t enough.

Keeping track diligently of lupus symptoms, flares, and treatments are a crucial part of finding out what is working for you — and just as importantly, what isn’t working. Having reliable and clean logs will make it easier to share accurate and identical information with all members of your care team and any new doctors that you may see. But what should you track?

Tracking lupus symptoms

If you are newly diagnosed or questioning if you have the disease, this is particularly important. Tracking your lupus symptoms daily can help you identify patterns in how you are feeling. For example, it can be easy to remember having headaches last week. But, it may be harder to remember how many days you experienced headaches and information about the pain.

When tracking symptoms, you should record:

• The day and time for which you are recording
• The type of symptoms you are experiencing – for example:
  • Fatigue
  • Joint pain
  • Muscle spasms
  • Many, many more
• A consistent detail about the severity of the pain or discomfort – for example:
  • Mild / Moderate / Severe
  • 1 = Incredibly mild  |  10 = Can’t imagine more pain/discomfort
• A brief description of the symptom – for example:
  • Pain may be stabbing, burning, etc.
  • A rash may be red and about the size of a dime
• The location of the symptom
  • Headaches may be on the front, left part of the head
  • A rash may be on the left elbow

Keep a medication log

When paired with the lupus symptom tracking, a medication log can be an invaluable tool to determine potential side effects of medications. It can also help determine if a medication cocktail is having the desired impact, or if it may need to be adjusted.

A medication log should include:

• The day and time for which you are recording
• The name, strength, and dose of medication that WAS TAKEN
• For reference, the name, strength, dose, and schedule of the medication that WAS PRESCRIBED

 

Download the LupusCorner app for support with tracking lupus, managing medications, and even chatting with other Lupus Warriors. It’s available for both iOS and for Android

 

Track your periods

For women that are still menstruating, tracking your periods can be an additional point of comparison to the symptom and medication logs. You may be able to identify additional patterns such as increased fatigue or soreness. If the uptick in the symptoms is significant, your treatment team may be able to develop strategies or treatments to minimize symptoms throughout your cycle.

You can use Flutter on your smartphone to track this.

 

Monitor your diet

There is plenty of misinformation on the internet about miracle food cures for lupus. While those are not to be trusted, tracking your food intake may help you identify which foods make you feel better or worse. Additionally, it is important to maintain a balanced diet to ensure proper health. Apps such as MyFitnessPal have large food directories. By tracking daily, you will be able to track your caloric intake and ensure you are getting enough of each essential element, like fats, proteins, sodium, carbs, and sugars. Without tracking, you may not realize how far off you are from the daily dietary guidelines.

 

 

Record your exercise

Exercise is all about goals. While you may not feel able to run a marathon, there are plenty of daily activities that keep you active and healthy. Monitoring walking for five to ten minutes, climbing stairs, or full gym workouts can help you monitor your progress.

“When you’re so tired it’s hard to explain but the quality of your life goes down. I’d go to the doctor and say I don’t feel good and they didn’t know why.”
– Venus Williams

Sjogren’s Syndrome is a serious condition that affects the quality of life. A Sjogren’s lupus combination presents a unique challenge.

Professional tennis star Venus Williams is ranked eighth in the world as a female tennis singles player. She’s known for playing hard and having a slight—but loveable—attitude on the court. Off the court, she’s an entrepreneur who owns her own interior design firm.

This constantly on-the-go woman also has a rheumatic condition. Diagnosed in 2011, Williams created a platform for Sjogren’s Syndrome. She drew attention to this little known autoimmune disease and shed light on symptoms people were experiencing as real life-altering problems.

What Is Sjogren’s Syndrome

Sjogren’s (SHOW-grins) Syndrome is when the body mistakenly attacks its own immune system—just like lupus. The two most common symptoms for a person with Sjogren’s Syndrome are dry mouth and dry, itchy eyes because the immune system usually targets the glands that make tears and saliva.

Other symptoms can develop in an individual with Sjogren’s, such as:

• Joint pain and stiffness
• Skin rashes and dry skin
• Vaginal dryness—(women are 9 times more likely to develop Sjogren’s)
• Persistent dry cough
• Drawn out fatigue

Interested in sharing your journey and seeing other #LupusWarriors’ experiences that have Sjogren’s?

Take our short survey and share your story.

Accordingly, Sjogren’s can advance and target other parts of the body other than the salivary glands such as the joints, thyroid, kidneys, lungs, skin, and nerves.

Possible complications from Sjogren’s includes:

• Dental cavities—saliva deters bacterial infection
• Yeast infection of the mouth or oral thrush
• Vision problems such as corneal damage
• Pneumonia
• Bronchitis
• Cirrhosis in your liver
• Tingling and numbness in the hands and feet
• Lymphoma—in very severe cases

Sjogren’s and Lupus

Sjogren’s syndrome is an undertaking by itself. #LupusWarriors, however, are more susceptible to developing Sjogren’s (as well as other chronic illnesses). Regarding most comorbid rheumatic cases involving Lupus, the second condition will follow shortly after the initial Lupus diagnosis. But that doesn’t mean it’s not possible to develop a second or third overlapping illness 5 or more years down the road.

Both disorders can develop into collagen vascular diseases. A strong distinction between Sjogren’s and lupus is sensitivity to light—individuals with Sjogren’s do not have this disease attribute. The main similarities are skin problems. Sjogren’s basically strips moisture from the body, and skin rashes from flares or sun exposure occur with lupus.

Skin Care Is Essential

For individuals that have Sjogren’ lupus combination, skin care should be a high priority. Lesions from lupus can cause scarring especially if there is lack of moisture. Moisturized skin heals better than dried out skin.

Choose products that have hypoallergenic, natural-leaning ingredients (in order to diminish the risk of the other reactions) and ultra moisturizing properties. A high-quality vegetable oil found at the local health food store such as argan or almond oil is perfect for skin nourishment and softening. (Maybe go exotic and try baobab oil!)

Don’t Ignore Your Symptoms—Tell Your Provider

When diagnosed with lupus, develop a plan to track symptoms and flares. Activities such as journaling can be extremely helpful to determine if other coexisting conditions are developing or have already begun. Communicate with your medical team and know there are medical and easy lifestyle actions to take if diagnosed with Sjogren’s and lupus.

Lifestyle Tips for Sjogren’s Syndrome

 

• Keep high-humidity work and home environments—humidifiers are fantastic
• Breathe through the nose, not the mouth—just like in yoga
• Be aware of medications that cause dry mouth
• Pay close attention to the health of your teeth and gums
• Be cautious of consuming foods that irritate and tear mouth tissue
• Don’t smoke or spend time in locations where others are smoking
• Make sure oral hygiene products are non-irritating
• Be careful of alcoholic beverages—they can cause dry mouth

 

Confused whether the headaches are lupus headaches vs migraines or both? Understanding the causes and symptoms can help you decide the right treatment options.

#LupusWarriors might experience the dreaded lupus fog bringing the mind and body often to a confused state and difficulty remembering potentially crucial parts of their life. And on top of that, the inability to adequately express themselves could also leave individuals who suffer from this condition feeling isolated and alone.

The struggles of lupus are real and severe. However, there is one symptom that people really dread—the lupus headache.

In the past, doctors and individuals had a difficult time understanding whether the “lupus headache” was a real issue. The event closely mimics either a primary headache or a migraine headache making it difficult to distinguish between the three. However, it’s imperative to differentiate, because there are different treatment strategies for migraines and lupus headaches.

Lupus, Migraines, and Comorbidity

Medical professionals understand lupus has the high potential of coupling with other conditions. (Lupus Corner blog post Fibromyalgia & Lupus: Comorbidity of Illnesses explains that concept further.) It, unfortunately, has the high potential of coupling with chronic migraines or bring about migraines.

Migraine Causes

Migraines are also a rather gray area in the medical world. Potential causes of migraines include:

• Sleep cycle changes
• Weather changes
• Food
• Skipping meals
• Drink
• Preservatives and sweeteners
• Sensory stimulation
• Hormonal changes
• Hormone medications
• Other medications
• Stress

Of note, #LupusWarriors are more susceptible to a compromised immune system, which can cause stress. Stress is also one of the main triggers for migraines. So, migraines can be a secondary symptom of lupus. (Side-note: Check out the blog post Aromatherapy, Stress Management, & Lupus to learn how to take it easy and prevent flares.)

 

Interested in sharing your journey and seeing other #LupusWarriors’ experiences?

Take our short survey and share your story.

Chronic Migraine Causes

Chronic migraines are a different story. People who suffer from this condition do so completely outside of lupus. Chronic migraines most likely happen well in advance from the onset of lupus. Most common in women under the age of 40, (similar to lupus), puberty and its hormonal changes commence these debilitating occurrences.

Symptoms of Migraines

Migraines and chronic migraines happen in cycles. The worst part of the cycle is the “headache.” These symptoms include:

Pain on one side or both sides of your head

• Pain that feels throbbing or pulsing
• Sensitivity of the senses
• Nausea and vomiting
• Blurred vision
• Lightheadedness and (sometimes) fainting

The usual medications medical providers choose to treat migraines are the same ones that treat primary headaches—analgesics; i.e., Naproxen.

Lupus Headache Causes

Again—there is a debate whether a lupus headache is different from a regular headache. Dimos D. Mitsikostas, Petros P. Sfikakis, and Peter J. Goadsby shared their findings in A Meta‐Analysis for Headache in Systemic Lupus Erythematosus: The Evidence and the Myth that the “lupus headache” is most likely just a primary headache.

The SYSTEMIC LUPUS ERYTHEMATOSUS DISEASE ACTIVITY INDEX, though, recognizes the term as legitimate and ranges it from mild (like a primary headache) to acute (like a migraine.) Many anecdotes from #LupusWarriors also support the existence of the “lupus headache.” Regardless, headaches from central nervous system lupus (CNS-SLE) are a real problem.

In some cases, lupus affects the central nervous system (CNS), which is where the headaches come into play. When CNS-SLE is active, the inflammation of the CNS causes the discomfort—more specifically, vasculitis.

What to Do Next—How to Determine If Headaches Are from Lupus

Talking to a medical team is essential to understand what treatment options are for headaches associated with lupus and migraines as some medications compromise the immune system. It is paramount to get checked for CNS-SLE if diagnosed with lupus and experiencing constant or severe headaches. Tests such as spinal taps and MRIs might need to take place to determine if the disease has spread to the CNS.

The Takeaway

Headaches and lupus seem to be one and the same. There are certain measures to complete to keep the body as healthy and comfortable as it possibly can be when experiencing lupus headaches—(be sure to take our survey and hear from other #LupusWarriors who have lupus headaches!). As always, there’s a community of people that understand the journey ahead and are here to support—hang in there.

Cutaneous Lupus Erythematosus is a chronic autoimmune disease and one form of lupus.

This form of lupus is limited to the skin. Approximately two-thirds of people with lupus will develop some form of CLE. Skin disease in lupus can cause rashes or sores (lesions). These symptoms typically appear on on sun-exposed areas such as the:

• face
• ears
• neck
• arms
• legs
• hands

Approximately two-thirds of people with lupus will develop some form of CLE

Subtypes of CLE

1. Chronic Cutaneous Lupus (CCLE)
2. Subacute Cutaneous Lupus (SCLE)
3. Acute Cutaneous Lupus (ACLE)

Chronic Cutaneous Lupus (CCLE)/Discoid Lupus (DLE)

The most common form of CCLE is discoid lupus (DLE), which appears as disk-shaped, round lesions that are raised, scaly, and red. Usually they do not itch or hurt. The sores usually appear on the scalp and face but sometimes they will occur on other parts of the body as well. These lesions can produce scarring and skin discoloration (darker and/or lighter colored areas). Discoid lesions that occur on the scalp may cause hair to fall out. If the lesions form scars when they heal, hair loss may be permanent.

Discoid lupus lesions can be very sensitive to light (photosensitive), so it’s important to avoid being outside during peak sunlight hours and make sure you wear sunscreen and protective clothing if you are out in the sun.

Discoid Lupus normally occurs without systemic lupus (SLE). However, some people with SLE do get discoid lesions. About 5% of those with localized DLE (above the neck) and 20% of those with generalized DLE (above and below the neck) can get systemic symptoms.

Lupus Warriors with DLE should be evaluated regularly to make sure that SLE is not developing.

Subacute Cutaneous Lupus (SCLE)

Subacute Cutaneous Lupus lesions may appear as areas of red scaly skin with distinct edges or as red, ring-shaped lesions, most commonly on sun-exposed areas of the arms, shoulders, neck, and body. They usually do not itch or scar, but they can leave the skin discolored. Lesions are also sensitive to light, so preventive measures should be taken when spending time outdoors or under fluorescent lights. SCLE is not often associated with SLE, but it is always important to keep your doctor informed of new symptoms or changes.

Acute Cutaneous Lupus (ACLE)

Acute Cutaneous Lupus lesions occur when SLE is active. The most typical form of acute cutaneous lupus is flat red patches on the face that resemble a sunburn. When the rash appears on both cheeks and across the bridge of the nose in the shape of a butterfly, it is known as the “butterfly rash.” The rash can also appear on arms, legs, and body. Up to 65% of Lupus Warriors experience the butterfly rash.

These lesions tend to be very sensitive to light. The lesions are non-scarring but change in skin color can occur.

While everyone needs good sleep, for Lupus Warriors it is even more critical, but often elusive.

“My mom thinks I’m lazy but I told her most nights I don’t even sleep … I just lay there.”

Is there anything worse than being tired but unable to drift off? Sometimes it’s the pain that gets in the way. Other nights, it may be anxiety. But whatever the root cause, sleep issues are one of the top five lupus symptoms. It can even be a lupus flare trigger.

So what can you do to get better sleep?

 

Start with Tracking Your Sleep

While it might feel like every night is just awful, there may be more variation. Before you can determine what is helping you sleep, you need to be able to measure it. Fortunately, there are awesome apps and devices that are making that easier than ever.

Lupus symptoms, and a different diagnosis known as drug-induced lupus, may develop as a result of taking certain medications.

Drug-Induced Lupus (DIL or DILE) is an autoimmune disease (similar to systemic lupus erythematosus) caused by long term and chronic use of certain prescription drugs. These drugs cause an autoimmune response. This is when your body’s antibodies attack its own healthy cells and tissue, producing symptoms similar to SLE.

The symptoms of DIL are similar to those of SLE, but it rarely affects major organs.

Of the 38 drugs known to cause DIL, 3 are most commonly connected with it:

1. Hydralazine
   • Used to treat high blood pressure or hypertension
2. Procainamide
   • Used to treat irregular heart rhythms
3. Isoniazid
   • Used to treat tuberculosis

There is no one established method for diagnosing DIL. Symptoms usually overlap with SLE’s symptoms, including:

• muscle and joint pain
• swelling
• fatigue
• fever
• inflammation around the lungs or heart that causes pain or discomfort (serositis)

The only way to know for certain that someone has DIL is if symptoms resolve and do not return after stopping the medication. Generally, lupus-like symptoms disappear between a few days to two weeks (sometimes up to six months) after you’ve stopped taking these medications.

DIL is more common in men because men take these drugs more often. Not everyone who takes these drugs will develop DIL.