What is Lupus?

Many can relate the word ‘Lupus’ to certain music artists. For instance, Selena Gomez, Nick Cannon, Seal, or Toni Braxton.

Some recognise Lupus from the TV show, House. With what was its rolling gag of, “it could be lupus.” 

Few may know it as a condition that a relative or friend has.

But for a small percentage of us, lupus is a word we first hear from a hospital bed. A word that rolls off the tongue but makes your heart sink at first. A time of panic and confusion that leads to many questions.

From here on in, the answers the consultants give you are calming. But peace with your new condition, your new life, comes with knowledge. From your own research. 

I know because I’ve been through this. Not only is this the foundation of this website. It’s also the purpose of this article. A simple one-stop-shop of what lupus is – from a person living with it.

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If you’re looking to learn the basics about lupus, this is the article for you. 

 

What is Lupus?

Lupus is a complex, life-long ‘autoimmune’ disease.

Meaning the immune system attacks healthy tissue. As opposed to only beating up the bad invaders. Over time this damages the body from within. Causing issues with the likes of the skin, joints, kidneys, and brain.

The outcome varies from person to person. With injuries occurring in more than one body part or organ being common. But wherever the damage is the worst, or first, will dictate what type of lupus a person has. [1]

Types of lupus

When most people mention “lupus,” they mean “Systemic Lupus Erythematosus.” 

As a  systemic disease, it can affect the whole body – including the internal organs. That’s why this is the most serious type of lupus. 

For this reason, there are subcategories of systemic lupus, such as:

• Neuropsychiatric systemic lupus erythematosus: This refers to patients that suffer with neuropsychiatric symptoms. These include headache, mood disorders like depression, cognitive dysfunction, seizures, and cerebrovascular disease. Inflammation of the spinal cord (Lupus Myelitis) is one of the syndromes that this form of systemic lupus can cause. For this reason, NPSLE is also known as Central Nervous System Lupus (CNS lupus).

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• Lupus Nephritis: This is a common complication for those with systemic lupus. This is when lupus causes kidney disease. It can first show its face with issues like swollen feet/legs (oedema), more trips to toiler, foamy urine and high blood pressure.

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Systemic Lupus is also the most common form – accounting for around 70% of lupus patients. [2]

Yet, there are other types of lupus: [3]

• Discoid lupus erythematosus: This type of lupus is a chronic skin disorder. Characterised by a red, raised rash appearing on the face, scalp, or elsewhere. The raised areas may become thick and scaly, and can cause scarring. The rash may last for days or years and may reoccur. A small proportion of people with discoid lupus have or develop Systemic lupus later.

• Subacute cutaneous lupus erythematosus: This is where skin lesions appear on parts of the body from sunlight. The lesions do not cause scarring but will occur whenever the sun damages the skin.

• Drug-induced lupus: A form of lupus caused by medications. At least 40 different drugs can cause drug-induced lupus. Symptoms are like those of Systemic lupus (arthritis, rash, fever and chest pain). But they go away when stopping the drug.

• Neonatal lupus:  A rare type of lupus that occurs in newborns. Usually of women with systemic lupus or Sjogren’s syndrome. But it can occur in women with no disease at all. Science suspects it is a result of autoantibodies passing on from the mother. 

That said, most infants of mothers with such conditions are healthy. But, all pregnant women with certain antibodies should be under the eye of a specialist. Especially during weeks 16 and 30 of pregnancy.

What are the signs and symptoms of lupus?

From head-to-toe, this condition can affect any body part.

Resulting in the likes of:

• Brain fog
• Dry Eyes
• Gastrointestinal Issues
• Arthritis in joints such as the knees
• Raynaud’s Syndrome in the hands and toes

There is no ‘one size fits all’ when it comes to systemic lupus. Signs and symptoms vary from person to person. Thus, the complete list of symptoms is quite vast.

A shorter list is the clinical criteria that medical experts use.  

The Systemic Lupus Erythematosus International Collaborating Clinics (SLICC) and the American College of Rheumatology (ACR) differ on their criteria a little. But they both do look for four or more clinical signs or symptoms.

Together, these signs and symptoms include:

1. Malar ‘butterfly’ rash over the cheeks of the face
2. Discoid skin rash: patchy redness that can cause scarring
3. Photosensitivity: skin rash in reaction to sunlight exposure
4. Ulcers: mouth, tongue, nose, or throat
5. Arthritis: two or more swollen, tender joints
6. Chest pain when breathing: inflammation of the tissue lining around the heart or lungs
7. Foamy/cloudy urine: odd amounts of protein in urine or clumps of cellular elements called casts.
8. Brain irritation, manifested by seizures and/or psychosis
9. Blood count abnormalities: low counts of white or red blood cells or platelets
10. Non-scaring Alopecia: Hair thinning or fragility (visible broken hairs)
11. Fever

How Do Doctors Diagnose Lupus?

Diagnosing this disorder can be difficult for two reasons: 

1. Symptoms come and go
2. Symptoms mimic those of other diseases

There is no also single test that can prove a person has this condition either.

To get a positive diagnosis requires going through the following tests: [3]

• A thorough and accurate medical history
• Complete physical examination
• Laboratory tests:
• Complete blood count
• Erythrocyte sedimentation rate
• Urinalysis
• Blood chemistries
• Complement levels
• Antinuclear antibody test
• Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
• Anticardiolipin antibody test
• Skin biopsy
• Kidney biopsy – the long scary clicking needle!

The big issue with this approach is that signs and symptoms only appear after the disease has taken over. Meaning, it must be rare to catch it at the start. Which would equal better treatment.

How is lupus treated?

There is no known cure for lupus – yet (stay positive).

Still, as said, no two cases are the same. In fact, science suggests that you can split lupus patients between seven groups. Meaning a more personal approach may be the next step forward in treating lupus. [4][5]

Until a cure surfaces, therapy can only help control the flame. The aim of which is to control symptoms, improve quality of life and reduce long-term organ damage.

Your prescription will depend on whether you have a ‘mild’, ‘moderate’, or ‘severe’ form. As well as what part of the body is being affected. 

Still, the backbone of therapy will include a combination of: [1]

• Lifestyle changes
• Antimalarials – such as the infamous COVID-19 related, Hydroxychloroquine
• NSAIDS
• Immunosuppressants
• Glucocorticoids, e.g., prednisolone
• Dehydroepiandrosterone (DHA)
• Plasmapheresis
• Belimumab

Also, you may need other medications – depending on the damage done to an organ.

This may include:

• Blood pressure tablets for heart or kidney issues
• Antidepressants, antipsychotics, or anti-seizure medication for neurological symptoms
• Blood-thinning injections and/or medicines for blood clots
• Calcium, vitamin D, and bisphosphonates for osteoporosis

Positive response to treatment ranges from 20% to 100% at 6 months. It all depends on: [6]

• The criteria used to define improvement
• The extent of visceral damage
• The patient’s ethnic origin and socioeconomic profile

So, it’s key to have a review every 1-3 months if your disease is ‘active’. Those in remission or with stable lupus may only go every 6 to 12 months. [1]

Of these treatments, only hydroxychloroquine, prednisolone, and belimumab have a license for lupus [1]. Yet, there is a new medicine on the horizon that could join the list called, Lupuzor. 

New therapies to control lupus and to reduce damage and infection are in high demand.

Who gets lupus?

Lupus is notorious for affecting females more than males. We’re talking ratios as high as 8 females to every man [7]. The reason why is unclear, but it makes sense to question the role that hormones may play.

This condition can appear at any age. But it is most common in middle-aged women – in their 30’s to 70’s. In men, it seems to present itself later in life during the age of 50 to the late ’70s [8].

The average age at diagnosis is 48.9 years [7]. But it’s lower in those of African-Caribbean descent. This is at least the case in the UK and North America [8].

Science suggests that Africa has a near-zero number of cases of Lupus (0.3/100 000 person-years) [8]. Implying that this difference is a result of poorer diagnoses in Africa. Or more so, that the cause of disorder lies within the western lifestyle and diet.

The USA is often seen as the trend-setter of western life.

And in good form, North America has the highest rates of lupus. This supports the idea that modern ‘western culture’ plays a role. 

With that said, science suggests genetics do play a part.

Siblings of those with lupus have a higher chance of the disease than the general public. The sibling risk ratio for such has been as high as 29%. Yet, identical twins top this with a rate of 34%. In comparison to unidentical (fraternal) twins at 3% [9].

Still, this could be a result of heredity behaviour like a diet. Alongside shared gut bacteria from their parents.

What is the outcome?

As of right now, there is no known cure. As to be expected when there is no known cause.

Despite improvements in survival rates. Lupus patients still appear to be two to five times more likely to die early [10]. For instance, one study suggests 25-years earlier than the UK’s general public. At around the age of 53.7 years [11].

Major causes of morbidity and mortality in such patients include [10]: 

• Infection
• Cancer
• Kidney failure
• Heart attack (myocardial infarction)
• Central nervous system disease

Science suggests the outcome to be worse for those with Lupus Nephritis such as myself.

Especially when it presents at a young age – again like myself.

This is due to the high risk of end-stage kidney disease. Which according to one UK study, occurs in 20% of lupus nephritis patients – within 10 years of diagnosis. 

This gives a mean age of death as 40.3 years old… with an average of 7.5 years between the development of lupus nephritis and death [12].

This is scary info I know. But use it to power your drive to be healthier than you have ever been before. There is light at the end of the tunnel – sometimes tough love is a must to push a person.

That said, I’ve had lupus nephritis for over 7.5 years now. In fact, other researchers claim most people with mild forms of the disease live a normal life span. For example, most women with lupus can get pregnant and deliver a healthy baby.

In fact, death from active lupus is rare – in the UK at least. [11]

It’s the complications that come with lupus that are the biggest worry. Some scientists suggest 10-15% of those with lupus die early due to complications [13].

The importance of getting off to a good start

Getting a correct diagnosis in less than 6 months equals fewer flares, lower healthcare costs, and a better quality of life. So, improving time to diagnosis is vital [14].

Lupus is prone to relapses and remissions, which increases the bad outcomes. Thus, it is also crucial to get the right treatment and regular check-ups. Due to how quick this disease can cause damage.

Patients with lupus have a high chance of developing other conditions [15]. Regardless of how mild the condition is. One reason for this is medications. For instance, steroid treatment like prednisolone can cause issues over time like [16]: 

• Weight gain
• High blood pressure and other risk factors for cardiovascular disease.
• Brittle Bone disease (Osteoporosis)
• High-fat levels in the blood (Dyslipidaemia)
• Low potassium (Hypokalaemia)
• High blood sugar levels (Hyperglycaemia)
• Insulin resistance
• Liable to infections

Final Thoughts

For these reasons, it is key that anyone with lupus put their health first. It is why eating the right foods and living a positive lifestyle is the key to longevity.

Healthy eating is much more than being a healthy weight. It’s the difference between living a long, vibrant life. One in which you can watch your kids grow up into adults. Scratch that, a long enough life where you can play a role in your grandkid’s life.

It’s not good enough to put all your faith into medication and the doctors. They can only do so much. Plus, the current treatments are somewhat effective. But, have considerable adverse effects, in particular over the long term.

You have to grab your lupus with both hands. Look deep into its eyes and head-butt the hell out of it! You have to put the effort in to understand your illness; your body. Only then can you know what to eat or do to beat lupus. With the hope to perform a medical miracle, and get rid of it for good.

That’s the sole purpose of this website: to crack the code that is lupus. But to know how to fix something, you need to understand why and how it is broken. This brings us to the question:

What Causes Lupus?

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