Lupus Diagnosis: UPDATED! | Lisa's Beauty Spot

Lupus Diagnosis

Hello lovelies! This post is going to be something very different, and something I wanted to share with you, and to try and spread some awareness. Tuesday 16th February 2016 (One day after my 22nd Birthday) I'd made an appointment to pick up some blood tests I'd had back in January. I've been having quite a lot of blood tests done recently, to try and get to the bottom of a wide variety of symptoms I've been having for quite a while. 

My appointment was at 3pm. I arrived about 20 minutes early, and it felt like an eternity. When my doctor finally called me in, her face told me everything I needed to know. She looked sad, and didn't smile or look me in the eyes when I walked through the door. I sat down and told her I was here to pick up some blood test results, she replied "Yes, I've just been taking a look" my last set of blood tests the doctors didn't even have them up and waiting, so I knew something was there. She asked me how I was that day, I told her I've been sore and really tired, but was in reasonably good spirits as I had just celebrated my birthday the day before. She then told me I'd had a positive result for Lupus, and she wanted to refer me onto a Rheumatologist as soon as possible. I froze, I went numb. 

She asked me did I have any questions... I probably had a million questions but I was too numb. I was then told I had to go for another blood test in 12 weeks time. (10th May) She wished me good luck, gave me my prescriptions and I went to the pharmacy to pick them up. I was in shock, I was thinking "how could this happen?! I'm 22, I'm so young" but it does...

For all those readers who don't know what Lupus is, it is an auto immune disease with a wide range of symptoms ranging from mild to life threatening. There are also lots of different forms of Lupus, I'm unsure which form I have - but the symptoms I have would tell me I have Systemic Lupus Erythematosus (SLE) which can affect the joints, skin and internal organs. I currently have no organ damage, but I have to have regular blood tests to keep an eye on this. Lupus affects around 15,000 of the UK population, so it is very uncommon. 90% of cases occur in women. There is no cure, but medications out there that you can take to help relieve the symptoms. 

A few decades ago, SLE was considered a terminal condition, today however, when it is caught early, the outlook is a lot better, and a lot of people diagnosed can live fairly normal lives, with a normal or near-normal life expectancy. It is not curable, but it is treatable. 

The symptoms I experience include:

• Joint and muscle pains
• Butterfly shaped rash across my cheeks and nose, sometimes all over my face during a flare up
• Fatigue
• Migraines
• Mouth ulcers all the time
• Difficulty sleeping
• High temperature
• Sensitivity to light
• Depression
• Swollen glands  

Lupus is an invisible illness, if you were to see me walking down the street you probably wouldn't be able to guess that I'm ill. I was more than likely born with it, it's not contagious, but I won't be able to give blood. 

The photo quality isn't great, but this is my rash on a typical day. It can be quite itchy, my skin peels and is very flaky.

The light makes this look a lot less worse, but this was one of the worst flare ups I've had. My skin felt like it was on fire or like I'd rubbed battery acid all over my face, nothing soothed it. I tried antihistamines, aloe vera cream, ice packs and drinking lots of water. It took hours to calm down. My chin was the worst, as you can see in the picture. It went a dark pink colour, and very blotchy - like the rest of my face.

My hair and eyebrows are thinning slightly, which is a symptom but nothing really noticeable, which I'm grateful for. Thank god for eyebrow palettes! 

  

I had my first Rheumatology appointment on the 20th April 2016 at Addenbrooks Hospital in Cambridge. It's been suggested that I'll need to go for blood tests every six to twelve weeks to keep an eye out for organ damage, which I haven't got at the moment. It's something that will need to be checked on regularly, so if it does happen it can be caught early. My first appointment went very well, we discussed symptoms and I was properly diagnosed, and began treatment: I was prescribed Plaquenil (Hydroxychloquine) 

Plaquenil is an anti-malarial drug. You take one tablet twice a day after meals. They begin working after around six months, so I'm not feeling the effect of them yet. 

I had my next Rheumatology appointment on 30th June 2016, and I also had an Ultrasound appointment on 3rd June 2016, for my shoulder. This came back reasonably normal so I've got to have physiotherapy on it. 

I also found out I have Lupus SLE and I was also diagnosed with Anti-Phospholipid Syndrome, which is sometimes known as APS or Hughes syndrome, is a disorder of the immune system that causes an increased risk of blood clots. This means people with APS are at greater risk of developing conditions such as: deep vein thrombosis (DVT), a blood clot that usually develops in the leg arterial thrombosis (a clot in an artery), which can cause a stroke or heart attack blood clots in the brain, which can lead to problems with balance, mobility, vision, speech and memory.

APS is an autoimmune condition. This means the immune system, which usually protects the body from infection and illness, attacks healthy tissue by mistake. It's very similar to Lupus, in that respect. A lot of people with Lupus also have APS. 

Thank you for reading!

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Lisa ♥