- Lupus Awareness
- This Surprising Symptom Could Be an Early Clue for Lupus
- Keep Reading
- Lupus | Symptoms & Causes
- What causes lupus?
- Lupus, Vasculitis and Blocked Blood Vessels
- Warning About Misuse of the Term “Vasculitis”
- What Is Vasculitis?
- What Vasculitis Is Not
- When Does Vasculitis Occur in Rheumatic Disease?
- When Is Vasculitis an Important Complication of an Autoimmune Disease?
- Diseases in Which Vasculitis Is the Specific Illness, Rather Than a Complication of Another Disease
- Vasculitis by the Size of the Vessel
- Why Does Lupus Lead to Easy Bruising?
- Understanding Lupus Bruising
Signs and Symptoms of Lupus
People with SLE can have many different symptoms, including:
- Fatigue or extreme exhaustion no matter how much they sleep.
- Joint pain or swelling.
- Skin rashes (in particular a butterfly-shaped face rash across the cheeks and nose).
- Hair loss.
- Recurring mouth sores.
Additional symptoms or conditions can include:
- Sensitivity to the sun.
- Lung problems.
- Chest pain when deep breathing.
- Fingers or toes turning blue or white or feeling numb.
- Heart problems.
- Kidney problems.
- Psychosis (disruptive thoughts and perceptions about what is or is not real).
- Blood cell and immunological abnormalities.
People with SLE can have periods of lupus symptoms called flares, followed by symptom-free periods called remissions. They may have flares often, or years apart, throughout their life and with varying severity. There is no cure for SLE, but getting an early diagnosis and getting treatment is critical to preventing long-term consequences and managing symptoms.
How Is Lupus Diagnosed?
There is no simple test for SLE. To diagnose SLE, a doctor will take into account the patient’s symptoms, signs observed during physical exams, and the results of X-rays and lab tests. SLE may be hard to diagnose because its signs and symptoms are not specific and can look like signs and symptoms of other diseases. SLE may also be misdiagnosed, so it is important to see a doctor who specializes in rheumatology for a final diagnosis.
Other Types of Lupus among Adults
- Cutaneous lupus (skin lupus) affects the skin in the form of a rash or lesions. This type of lupus can occur on any part of the body but usually appears where the skin is exposed to sunlight.
- Drug-induced lupus is similar to SLE, but it is caused by a reaction to some medicines. Symptoms usually appear 3 to 6 months after starting a medicine and disappear once the medicine is stopped.
— Selena Gomez is finally opening up about the real reason she took some time off in 2013: The pop star was busy with treatment for lupus.
In a new interview with Billboard, the actress-singer, 23, explained that she underwent chemotherapy for the autoimmune disease amid intense fan and media speculation (some reports said she was in rehab for addiction, adding insult to injury) about why she was keeping a low profile.
“I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke,” Gomez told the magazine. “I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy. You’re a–holes.’ I locked myself away until I was confident and comfortable again.”
9 Celebrities With Lupus
What is lupus? Short for systemic lupus erythematosus (SLE), lupus is a chronic autoimmune disease that occurs when the body’s immune system attacks its own healthy organs and tissues— and it can often take years to diagnose. Lupus can also sometimes be mistaken for other illnesses. Why? The symptoms are often non-specific and vary widely, such as fatigue, joint pain, swelling, fever, and rashes, especially what’s called a “butterfly rash,” which stretches across both cheeks and looks like a sunburn.
The inflammation caused by lupus can harm everything from the kidneys, skin, joints, and blood cells, to the lungs, brain, and heart. However, the physical and mental implications of the condition can be vastly different from person to person.
Because lupus is not only tricky to diagnose, but also tricky to understand, we asked several people living with lupus to share what it’s really like, what they wish people knew about this disease, and how they push forward. Here are their stories.
“Many people say that we ‘don’t look sick’ when there is a battle raging inside of us.”— Sharon Harris, 36, founder and president of Lupus Detroit
Harris, who was diagnosed at 23, has experienced it all over the past 13 years: from the “butterfly rash” to swollen joints. She is now recovering from a recent stroke.
“One day, I washed my face and brushed the washcloth across my eyelashes. stopped me dead in my tracks. I was too exhausted to scream but it knocked the life out of me so much so that I had to sit on the edge of the tub to regroup,” Harris says. “My eyelashes hurt—I will never forget that.”
But on the other extreme, Harris says there are days she feels like she can run a marathon. “See, lupus just isn’t a physical disease. It’s also mental. On my good days, my mind is clear and at peace, my movements are fluid.”
Her mantra: Avoid negativity at all costs, and love yourself. “You might be hairless, you may have a butterfly rash, your knuckles may be as swollen as large as lemons, but you still matter.”
9 Symptoms Used to Diagnose Lupus
“I’ve had folks tell me, ‘At least it’s not cancer.’” — Ayanna Dookie, 34, stand-up comedian Nov. 9 2012: Dookie will never forget the day she got her official diagnosis of SLE. She didn’t have any of the telltale symptoms of lupus, except for joint pain in her wrist that just wouldn’t go away. It wasn’t until her doctor ordered blood tests that it all lined up.
“A horrible day feels like I’m un-rested, like barely-can-keep-my-eyes-open-tired, my joints are aching, and my back is aching from the inflammation in my lungs,” Dookie says. “Performing basic functions is the biggest obstacle in the world, and it feels like the flare will last forever.” In other words, it’s not cancer, but it can still feel overwhelming.
Instead of waiting for her illness to fill up her schedule, though, she stocks her good days full of other activities and listens to her body about when she needs to cut back. This month, Dookie had a busy calendar with stand-up performances, and she even signed up for an inflatable obstacle course 5K run with friends.
“Maintaining good health isn’t just a physical journey,” she says.
“I had to give up a lot of my old life.” — Kristin Jones, 30, knitwear designer
Jones’ journey with lupus began just over a year ago, and while it’s required some major changes in her life, she’s learning how to live a full life with lupus.
“I’m having a great day, then it’s like I’m back to my old self. But I’m not, I’m still sick—and so no, I can’t go ride bicycles or go for a run,” she says. “Stretching for 10 minutes a day is really strenuous activity for me—and that’s something that people just don’t understand because when I’m sitting and talking to you, most of the time I seem normal.”
Still, Jones adds, “While your life does change and limitations change, that doesn’t mean you can’t be happy and fulfilled. Find your own new space in the world.”
15 Diseases Doctors Often Get Wrong
“The hardest part for me, hands down, is the health insurance component.” — Dana Whitney, 42, communications vice president.
At 17, Whitney noticed her first symptoms, sore muscles and a rash, which she thought was just a sunburn at first. But her mom, who also had an autoimmune disorder, became frantic when things got worse and took her see a rheumatologist, who diagnosed her with lupus.
“Unfortunately, my family did not have medical insurance at the time,” Whitney explains. “We had to wait a few months to pursue treatment in order to line up health insurance, so those first few months of high school were pretty tough.”
“It’s driven a lot of my career decisions in life” because of the insurance component, she says. “ the best parts are getting good news from doctors. ‘No more chemo, let’s come down on your drugs, that sort of thing.’ I’ve been healthy for quite some time now, and it’s great. It can happen.”
19 Medical Tests Women Need
“It’s hard to talk to people about what you’re feeling and have them really understand why and how you’re so tired.” — Jessica Goldman Fuong, 32, author and founder of the blog Sodium Girl
Fuong comes from a long line of women with autoimmune diseases. But it wasn’t until days after her 21st birthday when an lupus attack on her brain and kidneys occurred; blood tests later revealed lupus.
One of her tricks is adjusting the language she uses, both with herself and with her loved ones. Case in point? She embraces the word “maybe.” Fuong said, “I hate feeling like a flake. But now, by always saying maybe, I give myself an easy out when needed. And I set realistic expectations with friends.”
She also refuses to use words like “sick” or “tired.” For example, “For energy level, using a one to 10 scale—one being the energizer bunny and 10 being a sloth after a night in Vegas—humor never hurts, too,” she said.
“There are days when I feel great.” — Ingrid Harrell, mid-40s, teacher Harrell was diagnosed in 2011 after suffering from chronic joint pain that caused a limp.
Ingrid, too, described the heavy effects of fatigue and how it takes a toll on relationships with friends and family. “They write me off as a flake or a hypochondriac when this illness can really take a huge toll on your body,” she said.
Her advice for others: Give yourself a break. “For me, stress is a huge trigger for inflammation. I would advise avoiding stressful situations if you can and paying very close attention to your body. Pushing yourself too hard can lead to much more serious side effects,” she explained.
13 Ways Inflammation Can Affect Your Health
“The most common misconception is that lupus is not a disease that affects men.” — Anthony Turk, 47, publicist
Turk, who has a family history of lupus, was diagnosed in his 20s. Regardless of what he did to take care of himself, he ended up getting sick with colds and the flu, and suffered joint pain. It wasn’t until a doctor friend noticed the telltale butterfly rash on his face that he made an appointment and got a formal diagnosis.
While lupus is more common in women, anyone can get it. “Male lupus patients are being diagnosed with the disease everyday,” Turk says. “Lupus symptoms come in many different forms and not everyone has the same symptoms. Also, not all Lupus patients have the same severity of the disease.”
And one of the trickiest things, Turk says, is learning how to keep up with an unpredictable disease. “I have to be able to determine when I am too tired or run down and rest before I send myself into a lupus flare up. Also, I have to try and keep my stress level at bay because stress can send me into a flare up too.”
Still he adds, “This may sound strange, but it has been what’s kept me going amid some difficult times. If you love your lupus and embrace it and take care of it, you can better control it and you can keep it from controlling you.”
This article originally appeared on Health.com.
This Surprising Symptom Could Be an Early Clue for Lupus
With no single diagnostic test and symptoms that are easily confused with a number of other ailments (like rheumatoid arthritis, fibromyalgia, and hypothyroidism), lupus can often take months or even years to diagnose. In an effort to speed up the process and get patients properly diagnosed and treated sooner, scientists have been looking for clues to help doctors differentiate early lupus from other conditions. One possible clue: unexplained fever.
In a recent multi-center trial, whose results were published in the journal Arthritis & Rheumatology, researchers reviewed data on 616 patients who had been referred to one of seven academic centers (in Asia, Europe, North America, or South America) within the previous three years because they were suspected of having lupus. Doctors at the individual centers ultimately diagnosed 389 of the participants with early lupus and 227 of them with a “lupus-mimicking” condition, such as undifferentiated connective tissue disease (UCTD) or Sjögren’s syndrome.
Not surprisingly, people who actually had lupus were more likely to meet several of the 11 standard criteria used to diagnose lupus, such as a butterfly-shaped rash on the face, sensitivity to light, and mouth or skin ulcers. But they were also more likely to have unexplained fever, which is not among the current diagnostic criteria. About 35 percent of the patients diagnosed with lupus had it, versus just 14 percent in the lupus-mimicking group.
Blood tests highlighted some key differences, too, as lupus patients were more likely to test positive for specific antibodies (ANAs, anti-dsDNA, anti-RNP, and antiphospholipid) that are associated with autoimmune disease. People with lupus were also were apt to have a positive Coombs’ test and to have hemolytic anemia, a condition in which the red blood cells are destroyed too quickly.
Members of both groups were equally likely to have a low white blood cell count, low platelet count, or anti-Ro/La antibodies.
“This study is an element in the item generation phase of an ongoing international effort to devise new SLE classification criteria with a focus on early disease,” the authors wrote. What kind of changes might be forthcoming? That’s still to be determined, but the authors of this study noted that when they added fever, hair loss, hypocomplementemia (a lack of proteins in a part of the immune system), and a positive anti-RNP test to the current diagnostic criteria for lupus, “accuracy in classification of patients improved significantly.”
- Lupus vs. Rheumatoid Arthritis: What’s the Difference?
- 17 Facts About Lupus You Might Not Know, But Should
- Women Survivors of Child Abuse Have a Higher Risk of Developing Lupus
Lupus | Symptoms & Causes
Common symptoms of lupus include:
- loss of appetite
- weight loss
- swollen or achy joints
- muscle aches
- fever of over 100 degrees F
- skin rashes, especially a butterfly-shaped rash across the cheeks (this so-called malar rash is a hallmark of lupus) and rashes that develop on sun-exposed skin
- brittle hair, or unusual hair loss
- ulcers in the mouth or nose
- fingers that turn white and/or blue from cold or stress (Raynaud’s phenomenon)
Compared with adults, children with lupus are more likely to have problems with vital organs, especially the kidneys and the brain. These symptoms may include:
- dark urine; swelling around the feet, legs and eyelids (kidney inflammation, or nephritis)
- shortness of breath, chest pain (lung inflammation, or pleuritis)
- headaches, memory problems, seizures (brain inflammation, or cerebritis)
What causes lupus?
We don’t yet know why some children develop lupus and others don’t. It’s not contagious, like measles — you can’t “catch” it from another person. It’s not a disease that parents pass directly down to their children; in fact, there’s only about a 5 percent chance that a son or daughter of someone with lupus will also develop it.
While researchers do believe that genes play a big role in causing lupus, there’s more to it than that. Otherwise, you’d expect that if one identical twin has lupus, the other would, too — but that’s often not the case. Instead, there’s likely a two-part process involved in causing lupus:
- Family history: A child is born with certain genes that make him or her susceptible to lupus. Think of a forest in dry, hot weather: The ingredients for a wildfire are there, but it takes something else to spark the blaze.
- Environmental factors: The child encounters something—or a combination of things—that causes the disease to “ignite.” The environmental factors that may trigger lupus include infections, ultraviolet light and perhaps extreme stress. And given that so many lupus patients are female, it’s also likely that hormones play an important role in the development of and risk for this disease. However, there’s still a lot we don’t know about these triggers, especially why some affect certain children and not others.
Scientists are now working to discover which genes are involved in lupus — and how its potential disease triggers work — in order to bring us closer to curing or even preventing this chronic illness.
Lupus, Vasculitis and Blocked Blood Vessels
- Warning About Misuse of the Term
- What Is Vasculitis?
- What Vasculitis Is Not
- When Does Vasculitis Occur in Rheumatic Disease?
- When Is Vasculitis an Important Complication of an Autoimmune Disease?
- Diseases in Which Vasculitis Is the Specific Illness, Rather Than a Complication
- Vasculitis by the Size of the Vessel
- Small-Vessel Vasculitis
- Medium-Vessel Vasculitis
- Large-Vessel Vasculitis
The word “vasculitis” means inflammation of the blood vessels. (Vasc refers to blood vessels and itis means inflammation.) Vasculitis can be a diagnosis in itself, but more often it coexists with lupus or another autoimmune disease, and is considered to be a part of that illness.
Blood vessel inflammation is common to all the rheumatic autoimmune illnesses. When it occurs in a patient who has lupus, vasculitis may simply confirm a diagnosis for lupus, but cause no specific additional health problems itself. Sometimes its occurrence represents a change in the course of the lupus, with vasculitis becoming a serious complication. Thus, the word vasculitis can mean many things. If a doctor says you have vasculitis, ask what that really means in your case – what disease process is going on and what it means for you.
Warning About Misuse of the Term “Vasculitis”
Vasculitis should not be confused with “vasculopathy,” which simply means something is wrong with the blood vessels. If there is no inflammation, it is not vasculitis. (Vasculitis is one type of vasculopathy.) Some people – even physicians, but especially writers on the internet – incorrectly use these words interchangeably. Unfortunately, even some doctors use the term vasculitis to mean “an autoimmune disease and blood vessel abnormality that I don’t completely understand.” That is, they use “vasculitis” very loosely as a general term for autoimmune disease.
As a result, you may see statistics about vasculitis that are very frightening. But those statistics, when the word is used loosely, do not provide correct information about your specific situation, and most every conclusion that follows those statistics is likely to be wrong.
If your doctor says you have vasculitis, ask specifically what he/she means before you research it on the internet!
What Is Vasculitis?
Vasculitis is blood vessel inflammation that causes fever, pain, local tenderness and other evidence of blocked blood vessels.
When a blood vessel becomes inflamed and narrowed, blood supply to that area can become partially or completely blocked, cutting off blood supply to the tissues beyond. Inflammation causes the vessel wall to swell. This makes blood stick to the inner wall to form a clot. When vasculitis interferes with circulation in any part of the body, it causes local tenderness and pain. If the blood vessels are close to the skin, characteristic rashes occur. Depending on where the blockage occurs, almost any organ in the body can be affected. (Note: Vasculopathy can also block blood vessels, but it does not cause the fever, pain and local tenderness associated with vasculitis. It may, however, cause pain if the parts that are no longer receiving a blood supply die – a circumstance called “infarction.”)
While vasculitis may involve both the arteries (the thick muscular vessels that carry blood away from the heart) and the veins (the thinner vessels, without muscles, that carry blood toward the heart), it is rare for both arteries and veins to be involved at the same time.
What Vasculitis Is Not
Many problems that block blood vessels look like vasculitis, leading doctors to sometimes assume they are dealing with vasculitis. However, greater care should be taken to find out what’s really going on. Some diseases that are not vasculitis, but in which blood vessels become blocked, include:
- Atherosclerosis (hardening of the arteries)
- Growths on the heart valves that break off, especially those due to infection
- Excessive blood clotting (antiphospholipid syndrome)
- Vessel spasm, especially when caused by drugs (both legal, such as those sometimes used in intensive care units to raise the blood pressure of someone in shock, and illegal, like cocaine)
- Abnormal proteins in the blood that form gels in blood vessels in cold weather (cryoglobulins)
When Does Vasculitis Occur in Rheumatic Disease?
All of the autoimmune rheumatic diseases – including lupus, rheumatoid arthritis (RA), scleroderma and dermatomyositis – involve some level of underlying vasculitis. If you biopsy a swollen joint in a person who has RA, you routinely find vasculitis. That finding is consistent with the diagnosis, but it doesn’t imply any worse prognosis. It just suggests that an autoimmune disease is present. Vasculitis is a common finding in people with these diseases and important to help make a diagnosis, but it doesn’t necessarily mean anything more than that. The vasculitis itself may never be a problem.
When Is Vasculitis an Important Complication of an Autoimmune Disease?
There are times in cases of lupus and RA when the disease takes a different course because a different type of vasculitis has developed or because the blood vessel inflammation increases to become a large part of the problem. If that happens, you start getting sicker and develop a fever. These are clues to the physician that there has been a change in the course of illness. In those cases we say, “This is lupus complicated by vasculitis” or “This is rheumatoid arthritis complicated by vasculitis.” The disease has changed its character and usually needs more vigorous treatment.
Diseases in Which Vasculitis Is the Specific Illness, Rather Than a Complication of Another Disease
- Polyarteritis nodosa, which affects middle-aged people
- Temporal arteritis or giant cell arteritis, which affects arteries, usually in the head, of older people
- Allergic vasculitis, which is an abrupt reaction that sometimes follows infection
- Takayasu’s arteritis, which is a relatively rare disease of young women, largely in Asia, involving large blood vessels
- Wegener’s granulomatosis, which affects the kidneys, lungs and blood vessels
- Some of the new cancer drugs, called checkpoint inhibitors, sometimes cause vasculitis
These specific kinds of vasculitis are treated differently, depending on the underlying problem.
Vasculitis by the Size of the Vessel
It is often easier to discuss vasculitis in terms of which type blood vessels are involved (the small, medium or large vessels), rather than by the disease it is associated with.
This is the most common form of vasculitis seen in lupus and it is fairly common in dermatomyositis and scleroderma, but less common in rheumatoid arthritis. The small vessels are at your fingertips and inside your organs, such as the kidneys.
Some signs of it can be seen externally with a small magnifying glass. It shows tiny broken vessels in the cuticle and hemorrhages along the edge or under the nail. Or on other parts of the skin, especially the legs, you see little red dots with black centers that occasionally cause a burning sensation (Figure 1). This small-vessel vasculitis is not particularly threatening.
Figure 1. A rash type, often called “palpable purpura,” associated with small-vessel vasculitis.
Sometimes the pattern of blood vessels on the skin is very prominent (Figure 2). (The prominent blood vessel pattern may be normal in cold weather; in vasculitis it is present in both cold and warm.) It is a manageable but annoying category of the disease, with fairly mild symptoms that may not need treatment. Some people don’t even know that they have it. However, when the blood supply to the nerves in the feet is cut off by vasculitis, a patient may develop numbness or weakness in the affected areas.
Figure 2. A rash type, often called “livedo,” associated with small-vessel vasculitis.
Another type of small-vessel vasculitis in people with lupus and RA causes kidney inflammation called glomerulonephritis, which, if untreated, can cause kidney failure.
Small-vessel vasculitis can also be seen in children as palpable purpura (red dots that feel like tiny bumps), which causes a rash, but also causes abdominal pain and kidney inflammation (called Henoch-Schoenlein purpura, or IgA nephritis). It may come and go and be treated only when it’s causing problems, or it may require longer-term treatment.
In addition, small-vessel vasculitis can be seen in severe allergies and in several types of infections. When you treat the underlying cause, such as the infection, the vasculitis goes away.
Diagnosis of small-vessel vasculitis can be made by an experienced clinician simply by observation. Here, the question is not “Is it vasculitis?” but “What’s causing this vasculitis?” Less experienced physicians want to do blood tests or skin biopsy. Angiography and other X-rays of blood vessels are not useful for this type of small-vessel vasculitis. A kidney biopsy may be needed in some circumstances.
What does it mean when small-vessel vasculitis occurs in someone with long-term lupus or RA? You may not need to treat the vasculitis itself; you have to look at the whole patient and ask why has this complication has occurred. It could be an allergy or an infection, which should be found and treated. Small-vessel vasculitis should not be ignored because it is important, but it is usually not life-threatening. If allergy or infection has been ruled out, treatment with corticosteroids (prednisone) or other immunosuppressants may be negotiable, depending on what the patient wants to tolerate in terms of side effects.
These vessels include those that lead down your arms and legs, and also to your heart and brain, and even those supplying blood to your intestines or kidneys. Medium-vessel vasculitis is usually what physicians are referring to when they call vasculitis a serious disease. (For example, polyarteritis nodosa, a type of vasculitis that has its own name, tends to be very dramatic. People who have it say they have never felt worse in their lives.) Medium-vessel disease can occur in lupus and RA, but it is rare.
The symptoms of medium-vessel vasculitis include:
- Severe muscle aches
- Sudden loss of power in specific muscles (perhaps a foot starts dragging)
- Severe abdominal pain
- Sudden loss of circulation in a finger or toe that turns totally black
- Stroke or heart attack
Again, an experienced physician can make the diagnosis at the bedside based on symptoms alone. Blood tests are useful to confirm the diagnosis. Sometimes a muscle biopsy, nerve conduction study, or angiography is necessary to be sure. The reason for the vasculitis also must be identified: It may be caused by infection, such as hepatitis B; it may be polyarteritis nodosa alone; or it may be a complication of an autoimmune disease.
Medium-vessel vasculitis can be life-threatening because the blocked vessels going to the heart can cause a heart attack, or those going to the brain may cause a stroke. Survival depends on immediate recognition of the disease and immediate and vigorous treatment. When medium-vessel vasculitis occurs, treatment is not negotiable. High-dose steroids and cyclophosphamide, and some newer drugs like rituximab, are needed to reverse it as soon as possible. A number of newer drugs are also being considered and/or used in patients with this type of vasculitis.
The large vessels are those that lead from your heart (namely, the aorta and the arteries that go across the shoulders and down to the hips). Large-vessel vasculitis is not part of lupus or rheumatoid arthritis. When the large blood vessels develop vasculitis, it is an independent disease, such as Takayasu’s or giant cell or cranial arteritis. This type of vasculitis has completely different symptoms, usually involving fever and pain in the part of the body affected. Many times it requires a bit of cleverness to figure out what’s going on. Large-vessel vasculitis is not immediately threatening, but it can do a lot of damage if not treated for long periods. Treatment is aimed at preventing disability, such as the blindness that may be caused by giant cell arteritis.
Vasculitis is inflammation of the blood vessels; vasculopathy is anything that may go wrong with blood vessels. Vasculitis occurs as a regular part of rheumatic disease, or vasculitis may occur as its own illness. Many other problems may mimic vasculitis..
Vasculitis may be serious, but it is not serious in most cases in people with lupus and other rheumatic diseases. It may not even require any change in treatment. However, when serious vasculitis occurs, very aggressive therapy is necessary, depending on the cause. In serious vasculitis related to autoimmune diseases such as lupus, aggressive therapy with prednisone and other immunosuppressants is essential.
Summary of a presentation given at the SLE Workshop, a free support and education group held monthly for people with lupus and their families/friends.
Michael D. Lockshin, MD
Attending Rheumatologist, Hospital for Special Surgery
Director, Barbara Volcker Center for Women and Rheumatic Disease
Why Does Lupus Lead to Easy Bruising?
Understanding Lupus Bruising
A purple butterfly may be the universal sign for lupus, but sometimes black and blue seems to be a more accurate color for the disease. Lupus appears to give me a visible beating at times, with multiple bruises popping up all around my body for no apparent reason or injury.
Sometimes severe itching occurs before the lupus bruising and I am left wondering if I caused the massive bruise by simply scratching my itch, or if the itch was the bruise actually forming (chicken or egg, I have no idea which came first). I have asked doctors over the years, and there never seems to be any great concern expressed for what clearly is not normal as far as I, the patient, am concerned.
“Did you see this four-inch bruise caused by NOTHING?!” Before my diagnosis, doctors would either blame whatever medication I was on or check my blood platelets to rule out cancer, which it never was, thankfully, but I never received any solid explanation either.
I also experience easy scarring from anything that happens to my skin. Be it a bruise, a mosquito bite or the discoid rash I get from the lupus. A scar remains for months and in some cases, forever. Even simple little acne I get will now take longer than normal to heal and then leave a mark that is visible months later.
Why Am I Bruising So Easily With Lupus?
Here is what I have learned from my latest group of doctors and fellow lupies:
- People with lupus can experience bruising that seems unexplainable.
- This type of illness-related bruising is often caused by a low platelet count in the blood because the body’s autoimmune system attacks healthy platelets as well as those that have been infected with viruses or bacteria.
- Platelets are responsible for blood clotting, and the inability to clot properly will ultimately lead to increased or more severe lupus bruising.
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- Normal blood clotting can also be affected by the medications we take like aspirin
- NSAIDs and steroids like prednisone can also cause severe bruising by disrupt platelets, which can cause black and blue marks to appear, even over something as simple and benign as scratching an itch
- You can’t really predict or prevent it — the best advice is to take good care of your skin by staying hydrated and moisturizing with unrefined coconut oil
This is where I would normally give more advice. Unfortunately, other than to say, “Me too!” I am at a loss.
This is all I have to offer: love yourself. Know that your beauty and divine perfection lies within you, in your strength and courage to keep going, to fight this disease and be all you can be for the people who love you.
If you find that you need courage to face the world with these bruises and scars, borrow some of mine. If you are asked questions about these battle scars (as I call them) and don’t wish to explain, laugh it off and make up an amazing story where you battled the wolf — and it was you, the lupus warrior that won.
By: Howard Smith, MD
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Across the United States, nearly 1.5 million people are living with lupus. Although the incidence of lupus has tripled since the 1970s, scientists and medical researchers still don’t know what causes the disease.
Lupus comes in various forms, but by far the most common type is systemic lupus erythematosis (SLE). When you have lupus, your immune system cannot tell the difference between foreign invaders and your body’s healthy tissues and so it inappropriately attacks and destroy healthy tissue. The result is inflammation and pain in different parts of your body.
The symptoms and outcomes of this autoimmune disease can vary greatly, from mild joint and skin problems to life-threatening conditions that affect the heart, kidneys and/or nervous system. If lupus is not diagnosed early and properly treated, organ damage may occur.
Many people with active lupus feel poor in general and experience fever, weight loss and tiredness. People with lupus also develop specific problems when the immune system attacks a particular organ or area in the body.
These areas include:
The skin: Some patients with lupus have a red rash over their cheeks and the bridge of their noses. Other skin problems include large red, circular rashes that can scar. Skin rashes usually are aggravated by sunlight.
The joints: Arthritis is very common in people with lupus. It may be a problem that lasts for only a few days, or one that is persistent.
The kidneys: Kidney involvement in people with lupus is potentially life-threatening. The earliest signs of kidney disease are apparent from a urinalysis and often are first suspected when lupus patients feel ill with arthritis, have a rash, fever and weight loss.
The blood: People with lupus may have dangerous reductions in the number of red blood cells, white blood cells or platelets, which are cells that help clot the blood. Many times, there are no symptoms when the blood is involved, but some clues can be fatigue, seious infections or easy bruising.
The brain: Involvement with the brain can cause confusion, depression, seizures and, rarely, strokes. Fortunately, brain involvement is rare.
The heart and lungs: Lupus can cause inflammation of the tissues that cover the heart and the lungs. Patients may develop chest pain, irregular heartbeat and accumulation of fluid around the lungs and heart.
Because lupus may affect several important organs and lead to serious complications, a multidisciplinary team approach is essential for timely diagnosis and proper treatment.
Living day to day with arthritis, you’ve probably figured out when to wait out pain and when to call the doctor about it. But what if you experience something completely different – you’re short of breath, the slightest bump leaves a bruise or you’re shedding pounds without trying?
Believe it or not, these and many more symptoms that don’t affect your joints can be related to your arthritis. And some require immediate medical attention.
Here are 10 symptoms you should never ignore, why – and when to call your doctor about them.
Increase in fatigue.
More fatigue than usual could mean increased inflammatory disease activity, fibromyalgia, depression or anemia. These sometimes can be caused by rheumatoid arthritis (RA) and sometimes by medications used to treat various forms of arthritis. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil, Motrin) and naproxen (Aleve), as well as corticosteroids come with a risk of gastric bleeding that can lead to anemia. Methotrexate, a disease-modifying antirheumatic drug (DMARD), can interfere with the formation of blood cells, which also can lead to anemia.
Although a day of increased fatigue may simply be your body’s way of telling you to slow down and rest more, you should let your rheumatologist know if it is frequent, severe or goes on for more than a week, says Scottsdale, Ariz., rheumatologist Paul Howard, MD.
Easy bruising or bleeding.
If gently bumping into a table corner leaves a substantial bruise, your arthritis or the medications you take for it may be to blame. Autoimmune disorders such as RA and lupus can lead to a low platelet count, which can cause bruising for no apparent reason and bleeding from the gums, says Daniel Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan Health System in Ann Arbor.
Low platelet count is also a side effect of disease-modifying drugs, including methotrexate and biologics. Aspirin or other NSAIDs can affect blood clotting, and corticosteroid use causes the capillaries to become fragile and more likely to break and cause a bruise if you bump into something.
An occasional bruise is nothing to be concerned about. But if you notice that you bruise or bleed easily, Dr. Clauw recommends letting your rheumatologist know as soon as possible.
Shortness of breath.
This symptom, particularly if it occurs with a dry cough or little or no exertion, could signal a potentially serious problem, including a pulmonary embolism (blood clot in the lung) or interstitial lung disease (scarring of the lung tissue), which occurs in as many as one in 10 people with RA. If you are taking methotrexate, another possible cause is methotrexate pneumonitis (also known as methotrexate lung), an inflammation of lung tissue estimated to affect up to 10 percent of those who take it. In methotrexate lung, shortness of breath may be accompanied by a dry cough and fever.
Of course, if you’re just starting an exercise program after being sedentary for some time, you’re bound to pant a bit. Beyond this obvious sort of cause, any time you experience new shortness of breath, you should call your primary care doctor for an evaluation, says Dr. Clauw.
This symptom, particularly when accompanied by a fever, is a sign of infection. “Infection is a major side effect of disease-modifying drugs – both the ones and the biologics,” says Dr. Howard. “Because these drugs suppress the immune system, sometimes infections can turn quickly and become serious.”
Dr. Howard advises contacting your rheumatologist immediately if you are taking immunosuppressive drugs and have symptoms of a urinary-tract or bladder infection.
Change in the appearance of a mole.
A mole that changes in size or color or a skin lesion that doesn’t heal could be a sign of skin cancer. Although anyone can get skin cancer – particularly fair-skinned people who have spent a lot of time in the sun – you may be at greater risk if you take TNF inhibitors, a class of biologic drug that includes adalimumab (Humira) and etanercept (Enbrel). Fortunately, the increase appears to be slight for melanoma, the most dangerous form of skin cancer.
For non-melanoma skin cancers, however, a study published in the December 2012 Annals of the Rheumatic Diseases shows a 45 percent increased risk among people who take TNF inhibitors. It’s important to report any suspicious skin lesion to your dermatologist as soon as possible, says Dr. Howard. As with any form of cancer – and most medical problems – the sooner you get treatment, the better.
Unexplained weight change.
Weight gain is a common side effect of corticosteroids and some antidepressants and other medications, says Dr. Howard. But weight gain that is rapid or unexplained may mean that you are retaining fluids, which could indicate a problem such as kidney disease or congestive heart failure. Both are more common with certain forms of arthritis and need prompt attention.
Weight loss that occurs for no apparent reason also can be a sign of something serious. Possible causes include increased inflammatory disease activity; thyroid disease, which is common in people with RA; NSAID-related stomach ulcers; and celiac disease or Crohn’s disease, both of which affect the body’s ability to process nutrients and are more common in people with existing autoimmune diseases. If you lose 10 pounds or more without trying, Dr. Clauw recommends seeing your primary care physician.
There are many causes of chest pain, some of which may be related to your arthritis or medications. For example, NSAIDs used for pain and bisphosphonates used to treat osteoporosis can cause heartburn, or irritation of the esophagus that is felt in the chest.
The most urgent and concerning potential cause of chest pain is a heart attack. A 2010 study in the Journal of Internal Medicine found that for people with RA, the risk of a heart attack is increased 60 percent one to four years after diagnosis. People with other inflammatory forms of arthritis, such as lupus or ankylosing spondylitis, also face a higher risk, and using NSAIDs may increase that risk even more.
If chest pain is accompanied by symptoms such as heaviness or tight-ness of the chest, indigestion, pain that radiates to the back, arm, jaw or throat, extreme weakness, shortness of breath and irregular heartbeats – then you might be having a heart attack. Call 911 immediately.
Blood in stool.
This could be a sign of diverticulitis (an inflammation of small, bulging sacs on the wall of the colon), colorectal cancer, Crohn’s disease or gastrointestinal bleeding caused by NSAIDs, Dr. Howard says. If blood is bright red, it is likely coming from the lower gastrointestinal tract (the colon, rectum or anus). NSAID-related bleeding, which is more common in the stomach and upper portion of the small intestine, usually produces black, tar-colored stools.
“Tarry stools or blood always need to be evaluated ASAP,” says Dr. Clauw.
On the other hand, he adds, a bit of blood on the toilet paper could be due to a hemorrhoid, and isn’t necessarily cause for concern if it goes away in a few days.
Pain and swelling above your heel can be the result of increased physical activity, an injury or wearing shoes without proper heel support. But if the pain is accompanied by other problems, such as low back pain or swollen joints, it could be a sign of ankylosing spondylitis or psoriatic arthritis. Inflammation of the Achilles tendon, the strong cord of connective tissue that connects the calf muscle to the heel bone, is common with both diseases. It is important to get the right diagnosis and proper treatment, so alert your doctor if you have one of these symptoms and develop new pain in the Achilles tendon region.
Persistent sadness or hopelessness.
These feelings, as well as difficulty concentrating or loss of interest in activities you once enjoyed, are classic symptoms of depression. Feelings of depression are common when arthritis causes constant pain and interferes with your ability to go about your daily life, but in some cases depression can be a side effect of the disease process or of arthritis medications, particularly corticosteroids, says Dr. Howard. Pinpointing the cause is essential – as is getting treatment.
A 2012 study from the Centers for Disease Control and Prevention found that of almost 1,800 adults with arthritis surveyed, 31 percent had anxiety and 18 percent had depression. In many, the two overlapped.
“It’s important to discuss depression with your doctor, because if your RA gets better but you are still depressed, that can hurt your quality of life,” says Dr. Howard. If you are having suicidal thoughts, you need to speak with someone and get help immediately.