‘Lupus Dermatitis’ is a phrase I have created. In no way is this the language medical professionals used to describe my ‘skin’ situation, however given the enormous response I have had since starting this discussion, I realised I am not alone, and that giving it a name would help to understand it and begin to control it (we can only hope). I feel confident in how I have covered the tale of my torture, research and diagnosis with ‘Lupus Dermatitis’. For the past two weeks have threaded in and out of the silent, phantom torture I lived with for close to five years. Still, I want to formally recognise what was occurring so other lovelies experiencing this can seek help too.

Let’s First Talk About the Skin …Note: I’m not a doctor, but just go with it

In a perfect body, the skin is an organ. As well as other stuff, it appears to secrete hormones and oils. These all help your body keep healthy and safe, as they adjust the amount of heat exiting, leaving the body and release (…something) that acts as a cleansing agent. This (…something) keeps bacteria and germies (a cuter name for germs) from entering your body by neutralising them on the surface of your epidermis (outer most layer of your skin). Your epidermis does not appear to be one great layer of cling-wrap. It has the pores and openings for hair follicles and small cracks. As well as all the other stuff, the body releases oils through the pores of the epidermis. These oils keep the epidermis moisturised. A supple skin is a healthy skin. A dry skin is an angry skin. From what I know, dry skin is known as Dermatitis.

How Am I Different?

In my not-so-perfect body I have skin. That’s the first thing you wonder. I have the many layers of tissue that go in to the body just below the epidermis. I secrete hormones and sweat in the way I have always done, like other people do. I have not shaved off the hair on my arms, nor have they fallen off. BUT, somewhere along the way my complexion changed. I went from oily skin and hair, to dry skin and hair. My body ultimately stopped making these ‘surface oils’.

What Symptoms Does it Raise?

The clearest and most covered of these symptoms is the chronic phantom itch I have experienced on and off since 2014. This itch would develop due to unclear conditions. There was no specific topical applications or changes in environment that triggered it. Developing mostly on the limbs of the body, to the sufferer (me) it would feel like a severe, irritating rash but to witnesses there were no visible signs of anything amiss. The skin in question would remain the colour of surrounding skin, with no raised lumps or welts, no presentation of redness and no weeping or secretions. The period an episode of irritation would last was unclear and opportunities to resolve this irritation appeared to be minimal. Things that did not appear to help, hinder or trigger episodes include: climate, light exposure, contact with fabric, external moisturisers, water of any temperature or dietary intake. The two most successful treatments, though far from perfect or ideal, were full body immersion in ice water for a minimum of twenty minutes and/ or sedative antihistamines which target skin allergies.

Final Treatment and Diagnosis

Following in-depth and wide-ranging research, the issue was presented to a Dermatologist. With the extensive research they were able to broker some ideas and offer two solutions. Short-term was topical application of Eluphrat (active ingredient betamethasone dipropionate) and long-term was topical application of *Pharmacist made* LPC in an Emulsifying Ointment (LPC -or- Coal Tar Solution in an Emulsifying Ointment for application). Ultimately what this means is for a flare, I must suffocate my limbs in Eluphrat. Exactly following this I must dowse my body in the ointment. This ointment is like stinky tar in Vaseline.  Following application I cannot wear clothes, so I am stuck in my undies on a beach chair watching movies for 3 hours while it is slowly absorbed by my body.

What Happens Now?

This is my situation for the unforeseeable future. I must grease up once a week and carry the Eluphrat and sedating antihistamines everywhere with me ‘just in case’. It isn’t fun. I hope you have read about this in the past few posts and can reflect with seriousness at the situation I am in. My body does not produce oil. My hair is dry and damages easily. My skin burns easier than it did before. If you are having similar problems, document your environment as I did and attempt to make some changes in your lifestyle. My research went for over 6 months, but I suppose you may not have to struggle as I did. Dermatologists and GP’s need to know you take this seriously, because with a skin condition you cannot see you are next to f***ed trying to get a diagnosis. When I discussed this with my GP she shared the information to at least 5 patients I know of, so far.

Finally, Why Is This Happening?

Like the joy of nearly everything in my life, there is no apparent reason. I say this is Lupus Dermatitis, but who knows if it is related to that, or indeed any autoimmune illness. I feel as though my Lupus Dermatitis evolved from the vast array of mixed chemicals I have, and am, taking to treat my illnesses. First and foremost, I believe this is a direct result of my Rituximab. But that is because I choose to live with my blinds down. This evolved before I began my Rituximab infusion. Is my body attacking the hormones and oils meant to be secreted on my skin? Or is my body just not producing these? Is this related to Lupus at all? Or is it just something that happens to some poor unfortunate souls like me? So many unanswered questions.