“The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deuteronomy 31:8
Cutaneous Lupus Erythematosus
8 weeks of mouth ulcers, rashes, migraines, joint aches and extreme fatigue. 8 weeks of biopsies and countless blood tests. 8 weeks of trying different medications. 8 very long weeks.
Those are my symptoms. That’s how long it’s taken to confirm the diagnosis of Cutaneous Lupus. It’s also not lost on me that this is an insanely quick diagnosis for illnesses of this nature.
If you’re as clueless as we are to what this means, I’ve answered some of the most common questions below.
What is Cutaneous Lupus?
Cutaneous Lupus is an autoimmune disorder where your body attacks healthy skin cells as though they are diseased.
Oh, so it’s just a rash?
Nope. My immune system activates a response as though my body is fighting a disease, even though I’m healthy. Imagine the fatigue and body aches you feel while your body is fighting intense flu… that feeling is a constant for me. As well as the pain and frustration of multiple mouth ulcers and photo-sensitive rashes.
Is it contagious?
Nope. Lupus is caused by a combination of genetic dispositions and external triggers such as exposure to sunlight, certain medications, stress, not getting enough rest, etc.
Is there a cure?
Nope. Treatment varies from patient to patient. My current treatment plan involves corticosteroid creams for the rashes, mouth wash for the ulcers, Vitamin D as I need to avoid the sun, and antimalarials. The symptoms should go away for periods of time. When symptoms come back, it is called a flare.
Why antimalarials?
Antimalarial drugs decrease antibody production by altering my immune system. As my body is creating antibodies to attack healthy cells, the antimalarials work to decrease this production.
What’s your action plan?
Basically we’ve officially been able to rule out ‘systemic lupus’, the more dangerous kind of lupus.
I need to stay on the antimalarials and I need to take my rest seriously. At the first sign of any disease or infection, I need to see the doctor so that I don’t land up in hospital again because my body can’t fight disease on its own.
It’s also important that I do 6-monthly blood tests to check for lupus markers because cutaneous lupus can be a precursor to systematic lupus.
What can you pray for?
-Healing. That we are able to get rid of all the symptoms of my current flare and that no future flares will come about and that I’ll be able to come off the regular use of antimalarials
-Pray that this does not develop into Systemic Lupus
-Pray against side effects. Prolonged use of corticosteroid cream and antimalarials can lead to some not so nice side effects. Please pray against these.
-Pray against other illnesses and or infections. My body is not very good at fighting other diseases at the moment due to all the fighting it’s already doing to itself.
-Pray for wisdom for my doctors. I have an incredible dermatologist and wonderful GP who are working together to end this flare. I also need to see an ophthalmologist to ensure no damage is being caused to my eyes from the medication.
-Pray for my family. We are all going through this. Andy is having to take on a huge load with the boys and the house. I’m not able to be as hands-on with the boys. That, combined with the time away at doctors and in hospital, the boys are feeling a bit out of sorts. My mum would love to come over and help but she’s stuck in the UK due to the pandemic. My family needs a lot of peace, grace, and increased capacity.
We are holding on to the promise that the Lord Himself goes before us and will be with us.
*Please note that I am not a medical professional. The information above is based on our personal experiences. Should you have similar symptoms, please contact your GP to be referred to the correct doctors for diagnosis and the best course of treatment for you.
Confident of this... 