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Living with lupus means learning to overcome a wide range of challenges. How many of these ten are you familiar with?

The most common type of lupus is systemic lupus erythematosus (SLE). But, there is plenty of variability in how the autoimmune disease presents. These symptoms and the overall challenges of life with lupus can be devastating. Lupus Warriors have to endure unpredictable flares, a wide range of symptoms, and medications that comes with both pros and cons.

According to a review published in Lupus Science and Medicine in 2019, there are ten primary challenges that people face when managing lupus. This study mainly covered the medical challenges, but any Lupus Warrior will tell you that these challenges spread to many aspects of life.

Based on this review and the feedback from people in the LupusCorner community, LupusCorner created a list of ten ten major challenges for people with lupus, and what they mean.


1: Detecting Flares

Flares are episodes of increased lupus symptoms and disease activity. Often, flares can lead to trips to the emergency room and hospitalizations.

Both underlying immunological changes and environmental triggers appear to be linked to flares. Cold weather, dry air, sun exposure, and alcohol are only a few of the many and varied triggers for lupus flares. Flares are considered both a normal part of having lupus, and a wildly unpredictable and frustrating burden.

Predicting a flare is one of the most important and impactful challenges facing both doctors and patients. Unfortunately, it is also quite complicated. Triggers for flares can overlap and they can also be wildly different between individual people with lupus. Many people learn how to predict their own flares. But even the most aware lupus warrior can be taken by surprise.


Lupus Warriors can better identify their personal triggers with diligent recordkeeping. Note down what happened when you experienced a flare, and you will start to see patterns after a while.

On the medical end, new technologies are making flare detection viable. Recently released, the aiSLE DX Flare Risk Index identifies flare risk up to 12 weeks in advance. The test analyzes eleven cytokines (proteins in the immune system). Then, using artificial intelligence algorithms, it creates a single flare risk score.

Knowing a flare is coming can help clinicians with the development of treatment plans and it can bring some certainty to the lives of patients.


2: Reducing Glucocorticoids

Although there are many lupus medications including immunosuppressants like azathioprine (Imuran), Glucocorticoids, including prednisone, are a keystone treatment for SLE. They are widely considered the reason why survival rates for lupus are higher than ever. Removing them from medical regimens can bring back the disease, and is generally not recommended. However, these drugs have often terrible and intense side effects. They are even toxic over time, damaging the body when used chronically over a long period of time.

The side effects of glucocorticoid withdrawal are also a challenge. Fatigue, pain, loss of appetite, are all common as are more severe side effects. For now, the only way to manage this is to taper the dosage, which is typically only done if the patient’s symptoms are in remission.

Alternatives are being developed every year, and many are undergoing clinical trials. Glucocorticoids remain the standard of care for lupus.


3: Developing Better Evaluation Tools for SLE

SLE is very complicated and highly personal. It affects many different organs at the same time, and each person experiences it differently – neither of which make medical treatment and objective evaluations easy!

Medical diagnosis is still tricky for people with lupus. Blood tests, such as the antinuclear antibody test (ANA) can be used alongside other tests to diagnose lupus, but because lupus can mimic many other conditions, it can take many rounds of tests to detect it.

There are patient-reported self-assessment tools available like the fatigue severity scale (FSS) which can make it easier to quantify the challenges of lupus. Plus, there are clinical- and research-grade hybrid rubrics like the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI). These rubric rely on both the measurement of visible symptoms and laboratory tests. Others have recently become available, such as the SLE Responder Index and more refined self-assessment tools.


4: Developing New Medications for SLE

In the last sixty years, only one new medication (Benlysta) has been approved for the treatment of lupus (SLE). But, there are plenty of reasons to be optimistic about the future of lupus management. Lupkynis was recently approved for Lupus Nephritis. Plus, there are dozens of new medications in pharmaceutical pipelines, some of which have shown value in the management of other autoimmune diseases including rheumatoid arthritis.

Clinical trials contribute to the development and validation of new medications as do new strategies for stratifying patients. As has been seen with other diseases, not every patient will respond to particular biologic medications.

Finding the right clinical trial population is difficult for these studies — and supports the earlier need for new ways of measuring SLE. However, people with lupus are also on many other medications that could influence the effectiveness of the tested medication. There is also a high incidence of responding to the placebo. Perhaps due to stress or hope, and determining whether symptoms are in remission (rather than just under the surface,) is difficult to figure out.

You can read more about clinical trials and lupus, here.

Mycophenolate mofetil (MMF), Rituximab, Cenerimod, Voclosporin, and anifrolumab are all promising drugs for lupus. You can read more about drugs for SLE here.


5: Determining Why Lupus can be so Heterogeneous

About 1-in-200 people in the United States has some form of lupus (using the Lupus Foundation of America prevalence estimates). Still, everyone’s lupus symptoms are different and flares can be unpredictable. The path of disease is incredibly hard to predict. But why is this the case?

Researchers believe a combination of factors are responsible for contributing to lupus, both genetic and environmental. There are also other conditions that can happen alongside lupus, including autoimmune conditions such as Sjogren’s syndrome and metabolic conditions such as diabetes. Whether there is a cause-and-effect relationship between the different conditions, or if people with lupus are just very susceptible to overlapping conditions, researchers simply do not know.


6: Better Understanding of Biomarkers

The key to learning more about lupus is to better understand the causes of inflammation and immune system activity. However, in order to get the data, researchers need to untangle the web of biomarkers, both genetic and otherwise, for lupus.

There is good progress on both fronts. Recent studies found 24 new genetic markers that predispose someone to lupus. All of these, of course, are inheritable, and are also not guarantees – in all cases, the influences of the environment and the person’s behavior had as much of an impact.

More precise biomarkers of lupus and impending flares include various immune cells such as Anti-dsDNA antibodies, cytokines, and ANA antibodies. When it comes to biomarkers, absolute expression is not the only measurement. The relationship between inflammatory and regulatory cytokines, for example, may be more important than the overall expression of any single biomarker. Advanced statistical modeling and artificial intelligence is helping make sense of these different factors.


7: Managing Fertility and Pregnancy

While the majority of pregnancies among women with SLE are successful, there are still risks. In fact, all pregnancies are considered high-risk. Studies have shown that among Lupus Warriors who pursue a pregnancy:

  • 33% will  will result in a cesearean section
  • 33% will have preterm birth
  • over 20% will be complicated by preeclampsia
  • 50% of women will experience increased lupus activity during pregnancy

While SLE does not cause infertility, medications such as cyclophosphamide can cause issues. SLE pregnancies can have complications, including flares, and require careful management by a lupus treatment team. Some lupus medications can potentially hurt the developing fetus. In addition, although neonatal lupus (lupus of infants) is a separate condition from SLE, there is some relation in that the mothers are 20% more likely to develop SLE later on.

Plus, pregnancy brings a known contributor to lupus disease activity: stress. 


8: Managing Comorbidities and Lupus

Lupus can cause or occur alongside other conditions, known as “comorbidities.” A range of comorbid conditions can occur, from other autoimmune diseases to damage to organs caused by lupus. Mental health issues, including anxiety and depression, are also common.

Obesity and diabetes can be particularly difficult issues for people with lupus, and can lead to many additional complications. Like other comorbidities, both diabetes and obesity greatly affect the health of people with lupus. However, managing weight is tricky. Weight gain is a common side effect of lupus medications and fatigue can make it harder to maintain exercise programs. 


9: Building a Great Treatment Team

Lupus is known as the “great imitator” because of the range of symptoms that a patient can experience. In order to better understand comorbidities, one must assemble a team of experts that can understand the complexities of lupus and its many parts.

Many people with lupus have a group of medical professionals advising them on their lupus, known as a “treatment team.” A treatment team is vital to the treatment of lupus, but the types of people to put on this team can be variable. For certain, people with lupus need a rheumatologist, but you may also need:

  • a dermatologist
  • a cardiologist
  • a nephrologist
  • a neurologist
  • a gastroenterologist
  • an obstetrician
  • a psychologist
  • a nutritionist
  • a care coordinator
  • a health coach

Some clinicians are experienced working with other specialists. This can help when it comes to things like sharing health records — and ensuring clinicians are communicating.

There is also the issue that, often, people with lupus have a hard time getting diagnosed or believed in a medical context. You can read more about this problem, here. The situation is getting better, however, as awareness of lupus and chronic diseases increase and new technologies make it easier to confirm a lupus diagnosis.


10: Finding Holistic Approaches

One of the challenges facing treatment teams is balancing treating the disease. Also, at the same time, treating the human being that has the disease. In recent years, the medical world has gained a deeper respect for alternative medicine like acupuncture, meditations such as mindfulness, and massages such as reflexology (a massage that assists in circulation and is used to combat pain and fatigue). While research finds that these have limited benefits, the value of comfort cannot be denied and these practices do have benefits.

The medical profession is also improving accessibility, embracing techniques like self-management apps and telemedicine. Various diets (such as the autoimmune protocol diet) are also useful for treating lupus.

Indeed, respect for the preferences of patients and the value of alternative medicines has come a long way. However, there is still a long way to go.

Comments (6)

6 thoughts on “10 Challenges for Managing Lupus

  1. What is the most important biomarkers levels for difference of the Sjogren and lupus? Or only symptoms….

  2. I’ve recently been diagnosed but I know it’s something that I’ve struggled with for many years. I used to think I just had A LOT things wrong with me. IBS, MIGRAINES, JOINT ISSUES, TMJ, it seams every year something else was added. My QUESTION and problem is NOW , I’ve worked my entire life using vacation time for sickness. Still do. I’ve never been able to just take a vacation because I know I’ll need that time for those days when I’m too exhausted or ill to work. I also suffer from anxiety, hypersomnia, GERD, ( all diagnosed) I’m 57 years old. I’m now looking at possible VOCAL cord dysfunction.. due to months at a time for years now with problems in my throat. How can I file for disability? I can’t afford the time off work. Yet to file for disability you MUST be OFF work for a set amount of time. I’m getting concerned about my job because I’m starting to have difficulty concentrating and focusing. I’m worried about losing my job which is adding stress and creating more triggers. It’s a vicious cycle. I don’t know how much longer I can keep it up. What can I do?

  3. Does the company you work for have FMLA or a short/long-term disability insurance plan? What about filing for short-term disability with the state you work in. Your doctors will need to fill out paperwork for all. In NJ, state disability lasts for six months. Not sure what other states offer. If you go on short-term disability and feel like you are not able to go back to work at all, file for SSDI. It can take a long time to get approved. I suggest talking with an attorney who specializes in social security. They do not charge up-front fees and don’t get paid unless you win.

    I was in a similar situation. Working two jobs trying to make ends meet. I have four autoimmune diseases, including SLE and Sjogren’s. I couldn’t do it anymore, and am now on SSDI.

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