This post is long but please read it, out of all my illnesses this is the one I want you to understand. I have tried to make it easy to follow and understand but Lupus isn’t simple and isn’t easy. I briefly explained what Lupus is/does in my diagnosis story but I have never gone into any depth. It sounds utterly horrible in black and white but that is exactly what it is, is any illness pleasant? I truly hope you get more understanding about Lupus from this post.
I will start by telling you that there is 4 types of Lupus:
- Systemic Lupus Erythematosus – also abbreviated as SLE, this is also what people refer to when they say “I have Lupus”. It is the most common form of Lupus.
- Cutaneous Lupus Erythematosus – often referred to as discoid lupus. This form of Lupus is limited to the skin.
- Drug induced Lupus Erythematosus – this is caused by prescription drugs. The symptoms are similar to those of SLE however it’s rare any major organs will be affected. Symptoms tend to go away within 6 months of stopping the medication.
- Neonatal Lupus – (rare) and is not a true form of Lupus. Babies with this could be born with a rash, liver issues and low blood cell count. Symptoms usually disappear when the baby is 6 months old.
I suffer from Systemic Lupus Erythematosus so this post will be concentrating solely on that form. If you have ever researched this illness you might have noticed the term ‘wolf’ appear, this is because Lupus in Latin means Wolf. I have seen a lot of fellow sufferers refer to their Lupus as the ‘wolf’. You might have also heard the term ‘spoonie’ – which is a term I personally use. The term derived from the spoon theory written by Christine Miserandino, if you have the time it’s worth the read. Lupus is also referred to as the great imitator as it has similar symptoms to various other diseases – often causing a misdiagnosis or a prolonged diagnosis time. It can also in a sense ‘hide’ itself, meaning the patient can have a negative blood test but still have the disease.
Lupus is a poorly understood auto immune disease and is incredibly complex. So don’t feel bad for not understanding it, I’m even a mind boggle to my GP and it took me a while to get my head around it. Your immune system is designed to keep you healthy, if your body has something foreign in it, the immune system sends out white blood cells to attack it. However, mine is confused and it’s sending white blood cells to attack the things I need. It essentially thinks my organs and healthy tissue are a foreign body and need to be destroyed. People often think my immune system is weak but it is actually stronger than a healthy individual, hence my lack of minor ailments such as colds and common infections. This is why I need medication to suppress my immune system.
There are many symptoms of Lupus, the disease presents itself differently for each individual with the illness, it’s rare that two people would suffer identically. Here is a short list of symptoms, if I was to list them all, the list would be extremely long:
- Facial & body rashes
- Chronic Fatigue
- Joint pain/muscle pain/swelling
- Mouth & nose ulcers
- Depression & anxiety
- Difficulty with concentration/memory
You cannot catch Lupus. The cause is unknown, although experts say there is more than one factor. Genetics are one, my father and I both suffer from Lupus but his father was adopted as a baby so we are unaware if this disease runs on my Grandfathers biological side. The illness is now in our gene pool meaning my future children have a chance of developing the disease, the same goes for my older brother, he’s healthy but that’s not to say his future children won’t develop it. The next factors are environmental, however concrete evidence for environmental factors are limited. During the diagnosis process and the months that followed my diagnosis I had my own theory of where my Lupus came from. I had started a new job of full time 12 hour night shifts, I fully believe that by changing my routine so drastically and forcing my body and brain to function from 8pm-8am had caused my immune system to go haywire. Of course I also include the genetic factors in my theory.
Patients with suspected Lupus will be referred to a Rheumatologist, however the diagnosis process can be long and stressful. I was extremely lucky to be diagnosed within 6 months from showing symptoms. So the specialist can arrive at a firm diagnosis they will expect at least 4 of a list of 11 internationally accepted symptoms to be present, including positive blood tests. Your family history will also be taken in account. There is no single blood test that can confirm Lupus which is why the patients symptoms are also taken into account. Here are the blood tests used to help confirm a diagnosis:
- Anti-nuclear antibody test – also abbreviated as ANA. Most people with Lupus have a positive ANA however this test can be positive in those without Lupus so this alone cannot diagnose.
- Anti-double-stranded DNA (anti-dsDNA) antibody test – a positive result means it’s highly likely the individual has Lupus as this test rarely shows positive in people who don’t have Lupus. The level usually increases when Lupus is active.
- Antiphospholipid antibody test – a positive blood test for these auto anti-bodies means the individual may be more at risk of miscarriages and blood clots.
When I say I have an illness that could kill me, am I joking? No, I’m not joking. Lupus can kill, 20 years ago only 40% of Lupus patients were expected to live 3 years after a diagnosis. Luckily with medical advances patients with Lupus have the same life expectancy as a healthy individual, but that doesn’t mean something can’t go wrong. Complications can arise:
- Kidneys – kidney issues are common in Lupus. Approximately 40% of Lupus patients will develop kidney problems. Kidney failure is a leading cause of death in Lupus patients.
- Heart – Lupus can cause inflammation of the heart. There is a risk of cardiovascular disease and heart attacks too.
- Lungs – Lupus can make you susceptible to pleurisy and pneumonia.
- Brain and central nervous system – if your brain is affected, Lupus can cause strokes, seizures, hallucinations and behavioural changes.
Treatments for Lupus vary and you may find different people are prescribed different medications. This is because, like mentioned above Lupus is a very individual disease and affects people uniquely. Treatment plans aren’t a one size fits all – here is a list:
- Anti-malarials – Hydroxychloroquine and Mepacrine are most commonly used in treating Lupus. I found anti-malarials helped keep my rashes down but not helpful enough for pain.
- Steroids – I speak to a lot of people online who are on steroids such as Prednisone. I have never used them but they have been proven to improve Lupus symptoms and in some cases are lifesaving.
- Immunosuppressants – the most common used medications in this category are Azathioprine, Methotrexate and Cyclophosphamide. Regular blood tests are required for these medications. I take Azathioprine, and I’ve found it particularly helpful with headaches.
At present, there is no cure for Lupus and there is a lack of funding for research. Sufferers like myself, remain very hopeful that one day there will be one.
Before I go I want to talk about the wonderful charity, Lupus UK. They helped me a lot whilst I was going through my diagnosis. You often hear people saying they love a certain charity and that’s a feeling you get when you need a charity to become a voice for you or a loved one. Lupus UK provided me with accurate information that was straight forward to understand, booklets for my employer explaining the disease and general support. The charity was also kind enough to share this blog, which was more than appreciated. They also fund research into the causes and a cure. If you see fitting please donate to this charity or purchase something from their shop. I know myself, thousands of other sufferers and the charity itself would be grateful for any donation. Thank you xo