World Lupus Day – The disease with 1000 faces

Happy World Lupus Day!

Today is World Lupus Day, I didn’t actually anticipate for this post to come out on this day, this has been in my drafts for a while now slowly coming together and it just happened to be ready now with perfect timing! World Lupus Day is here to help spread awareness and understanding of the disease. This is what today’s post is about – sharing what I have learnt over the past 9 years of living with Lupus. 

Lupus has been dubbed as the disease with 1000 faces, it can and does affect every person differently. Symptoms and intensity vary hugely and to make matters more complex, they also mimic so many other conditions. Every experience is unique, every persons’ reaction to treatment is different, which is what makes diagnosis and treatment so very complicated.

There is not one blood test to confirm Lupus, nor one symptom that shows you have it. It is rather a combination of blood tests and symptoms together that lead to diagnosis. Many Lupus patients are mis-diagnosed at first, and this is not at all the doctor’s fault, it is just that this condition is just as confused as we are. 

Lets talk about medication and treatments

Without treatment, Lupus can be an aggressive disease which attacks its own body, it has an ability to affect literally any organ. Luckily with today’s medicine, technology and knowledge we are able to control the disease activity much better and able to have a much more ‘normal’ life span and quality of life.

Unfortunately what works amazingly for one person might not work for someone else, regardless if their symptoms are identical. One of the most common and standard ‘let’s start with this’ medication is Prednisone, a.k.a. steroids. Personally I have been on this since the beginning, so that’s almost 10 years of steroids for me, non-stop. This medication does its job well, however it can also be harmful in the long run possibly leaving irreversible damage which I have written a little about previously.

Prednisone on its own is usually not enough, the next steps depend on your condition. Most commonly it would be some anti-malerial medication to help alter the body’s internal communication of when there is an ‘intruder alert’ by adjusting the immune system response. The most commonly prescribed would be Hydroxychloroquine, along with other immunosuppressive medication which would be the first combination of medicine used to treat Lupus. Interestingly, none of the medication currently used to treat Lupus is actually designed to treat Lupus, they were all first invented to treat other illness’ like malaria, organ transplant patients and cancer patients. This is actually currently being researched, with a new trial currently in place in the UK, so fingers crossed! Unfortunately I did not meet the criteria for this so will not be trialing.

After this we move into stronger, more targeted treatments like biological infusions and chemotherapy drugs. Usually the dose will be far lower than for people who are receiving the treatment for cancer, however it still does take its toll on the body. Personally I have tried a biological infusion called Rituximab, you can read all about my experience here and here which unfortunately ended badly for me. 

All of the medications we take, of course we hope to be able to stop one day and be in remission (which is when the disease is no longer active in our body). This is what I am working towards, however for the time being the dosage and medications seem to be increasing to help fight my Lupus Nephritis.

An Invisible Illness – The Symptoms

Lupus is known as an invisible illness, for a lot of us just by our appearance we look normal… healthy even, as most of the activity is on the inside (kidney, liver, heart, brain) and even on the outside you cannot always tell. Here is my current outside appearance, the left side of my face I have applied make up, the right is completely clean. This photo was taken yesterday, although not a huge difference at the moment, you can definitely see the redness from my butterfly cheek rash which indicates active Lupus in my body.

Many of us suffer from Rheumatoid Arthritis (RA), the type of arthritis that is caused by an underlying autoimmune disorder causing inflammation in our joints, rather than the more common osteoarthritis which is the ware and tear of using the bones (common in old age). Fatigue also plays a huge role is most Lupus warriors, unless you’ve had it, it’s hard to describe. It’s not just that I get tired… I can’t physically keep my head up or eyes open.

When I first started experiencing symptoms prior to diagnosis, I had a period where I was at school and asleep at my desk, obviously I just looked like a bad pupil. When I woke up to a teacher furious at me, I was oblivious as to what had just happened, I wouldn’t even remember feeling like I would fall asleep, it just happened so quickly. Nobody knew at the time why, and I was just confused and upset by the whole situation as I obviously did not mean to fall asleep, I literally couldn’t help it. You can read all about my diagnosis story here.

Symptoms can be mild or strong and can vary drastically day to day. With Lupus you never know what’s around the corner, you could flare up in a moment’s notice then spend weeks recovering. Usual signs that a flare is coming up for me is fatigue, rash on my cheeks and increased joint pain. 

Here’s a timeline of my Lupus journey so far:

2010 – Symptoms of fatigue and joint pain began

2011 – Diagnosed with Lupus SLE

2012 – Diagnosed with Reynolds Phenomenom 

2013 – Pericarditis episode

2015 – Foot inflammation causing inability to walk

2017 – Protein leak in my urine begins during pregnancy

2018 – Kidney biopsy performed post birth and diagnosis of Lupus Nephritis type 3 & 5 confirmed

2020 – Pleuratic chest pains, high blood pressure begins

2018-Present – Protein leak continues to be unstable, however kidney function is still stable at 90%. Still searching for the best treatment for me

That’s my story in a nutshell so far, as my journey continues I appreciate you following my blog. If you haven’t already, there are posts going more into more depth about my experiences and flare ups, please take a read if you have the time.

For now, happy World Lupus Day, I hope this post has helped you to understand a little more about this complex condition. Please check out the Lupus UK website for more information.

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I hope you are all keeping well, sending love to all ♡ 

Ruby x

*Disclaimer: I am in no way an expert or doctor, these are completely my own opinion, thoughts and views.