As a chronically ill patient, Shannon has a lot of experience with illness overall. This gives her a unique perspective on writing articles.
Dr. Jean-Luc Senécal of the University of Montreal called lupus ‘the disease with a thousand faces’ in his book (of the same title). Anyone who has firsthand experience with lupus, either as a patient or a caregiver, can agree. No one patient is the same when it comes to this autoimmune disorder. So, a one-size-fits-all approach is rarely an effective form of treatment. Even the best treatments today can make maintaining any quality of life very challenging. Because lupus is such a great imitator, diagnosing it can take years and it is indiscriminate in who it attacks. But what is it exactly?
When I describe lupus to someone, I use a rather creative analogy. Imagine your body, from the top of your head to the bottom of your feet, as a kingdom. Your skin functions as the walls of this kingdom while everything within the walls serves a purpose. Like any healthy kingdom, there are knights and guards that take care of invaders and keep the kingdom safe. Most of the time they are excellent at their jobs, but for some people, they start to see members of the kingdom as enemies instead of friends. The knights and guards best represent your immune system, a fast acting feature of your body that attacks unfamiliar cells and organisms that it deems unsafe for you. When this system goes haywire, it attacks parts of you. For multiple sclerosis, that’s the myelin layer that protects your nerves. For rheumatoid arthritis, it’s mostly your joints. With lupus, it can attack pretty much anything.
Who Does Lupus Attack?
As mentioned above, lupus is indiscriminate. Though 90% of lupus patients are female, men get it too. And, it’s much more common for those of African, Native American, or Latinx descent. But, that doesn’t mean that any one ethnic group is exempt. You can read more about this on Lupus LA, a non-profit health organization founded by the caregivers and families of lupus patients.
The LUMINA study is well known in the lupus research field for being a very informative tool when it comes to lupus activity in minorities. For instance, lupus has a serious impact on Hispanics, particularly those of Native American descent. While a genetic factor is at play with minority ethnic groups affected, so is socioeconomics. Unfortunately, statistics gathered in the LUMINA study show that access to adequate health care plays the biggest part in mortality rates among minorities.
Lupus can attack anyone, at any age, and in any social class.
What Are the Symptoms?
The better question here might be what isn’t a possible symptom of lupus? Officially you have to have four or more of the eleven criteria recognized to get a lupus diagnosis. These criteria are listed below:
- The infamous Malar rash. It’s a butterfly shaped rash that spreads across the nose and cheeks.
- Raised, red rashes on the skin. These rashes are often times patchy and flaky.
- Sun sensitivity. Those with lupus frequently experience a flare of symptoms when exposed to sun light (or UV lamps). It may look something like a bad sun burn.
- White mouth sores can sometimes appear. They are painless (unless you’re like me and accidentally bite them!)
- Arthritis, along with tenderness and swelling is a sign of lupus. Unlike osteoarthritis or rheumatoid arthritis, this will not destroy your joints.
- Pleurisy is inflammation in the chest cavity, such as around your heart or lungs. It can feel like sharp, stabbing pains in the abdomen.
- Unusual neurological symptoms ranging from clinical depression to severe psychosis can also be a symptom of lupus.
- Developing excess protein or cellular casts in the urine can be a sign of kidney disorder, and of lupus activity.
- Hematologic blood disorders can also indicate lupus activity in the body and is one of the eleven criteria to be used to diagnose with this chronic, autoimmune disorder.
- Certain antibodies indicate an immunologic disorder. These antibodies are specific to DNA and certain proteins found in plasma and your own cells.
- A specific test called an ANA test can be used to determine diagnosis. Most lupus patients, (though it’s important to note that not all), get a positive result on this test.
Officially this is the required criteria, but many patients have common complaints when it comes to lupus. For example, headaches are a common complaint for lupus patients, along with confusion and dizziness. It is important, however, to realize that these symptoms can appear as a result of stress or many other relatively easy situations to remedy rather than an auto-immune disorder. In fact, diagnosing an auto-immune disorder can sometimes take years, so it’s important to not jump to conclusions when symptoms appear.
One symptom shared by almost all lupus patients is fatigue. Any time you experience unusual fatigue it’s important to go to the doctor. For lupus patients, this is simply a normal part of this chronic illness. It can range from frustrating to debilitating, leaving the sufferer trapped in their beds or overstuffed living room furniture. Like the above mentioned symptoms, fatigue can be shared by many other conditions but if someone in your life is a lupus patient, or even just if the doctors suspect it, they are likely battling fatigue.
How Is Lupus Treated?
Treating lupus is as unique as the patient. In some cases patients can be treated with non-steroidal anti-inflammatories such as ibuprofen or naproxen. Many doctors will give you a prescription and in some cases doctors will monitor the health of your kidneys.
Oddly enough, antimalarials are also used in treating lupus. Doctors have found that in treating malaria, malarial medications like hydroxychloroquine sulfate can reduce the risk of lupus flare ups. Though, it’s important to realize that they can have bad side effects and don’t work for everyone.
Steroids, like prednisone, are also used in treating lupus. They can help reduce the severity of flare ups, making quality of life and damage from the illness easier. However, it isn’t a long term solution as continuous use of steroids can be very damaging.
There’s also immunosuppressants and biologics. Examples of immunosuppressants include chemotherapeutic drugs like methotrexate, which destroys fast acting cells and helps control an abnormal immune system. Unlike methotrexate, biologics are taken via a shot and are also very good at helping to reduce lupus symptoms in certain patients.
And, in cases of particularly resistant lupus, a medication called Rituximab is used. Rituximab attaches to certain cells in your immune system and causes them to die.
It’s important to remember that the only person who can diagnose lupus is a healthcare professional. Lupus is a complex disorder that affects everyone differently so comparing my experience to your own isn’t wise. If you’re experiencing symptoms like this, it’s best to make an appointment with your regular provider. Keeping a journal of your symptoms, diet and mood can be very useful.
Further Resources and Information
For more information on lupus and resources that could help you, check out these links:
Mayo Clinic: this resource is great for reading about how lupus is diagnosed and treating.
Lupus Foundation of Pennsylvania: an excellent choice for those in Pennsylvania, many outside of New England can find resources on this site to help.
Lupus LA: A foundation for lupus, Lupus LA provides patient services, support groups and other very useful functions to lupus patients in Los Angeles as well as valuable knowledge for visitors to their site.
Lupus Foundation of America: The Lupus Foundation of America has chapters in every region and often organizes events, such as a 5k walk to help raise awareness.
Do you suffer from lupus? How long did a diagnosis take and what four criteria did you meet to get diagnosed? Let's chat in the comments!
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Shannon Perry (author) from HENDERSONVILLE on February 11, 2019:
Thank you Mona! I feel like knowledge, even if it doesn't fix things, can bring you a great comfort. It puts a face on this assailant that's attacking you from the inside.
Mona Sabalones Gonzalez from Philippines on February 11, 2019:
I'm sorry to hear that you are enduring chronic pain. I hope that you get well and am keeping you in prayer. This article was very informative and helpful. Many people will likely benefit because you wrote it. Take care.
Pamela Oglesby from Sunny Florida on May 25, 2018:
I have had lupus for decades and have tried all the medications listed during flareups. I also have Sjogren's disease, which is another common autoimmune disorder associated with lupus. Dry eyes, mouth, dry skin, and now a lung disease associated with this disorder. Each area needs special treatment.
As I was on prednisone at high doses for so long I now have severe osteoporosis, which is a whole other topic. Benesta is the first medication for lupus in the past 50 years. It is typically effective. As I was also an RN, I treated patients with lupus at various times also.
I think the way you described lupus was very good, as it is all of those things. I would suggest to anyone who has several of these symptoms to see a rheumatologist.