Telling my Pityriasis Lichenoides story

This blog contains references to specific medication and treatment. If you are struggling with Pityriasis Lichenoides, please contact your GP and/ or dermatologist as each person needs to be assessed on an individual basis.

When I saw the British Skin Foundation’s Instagram post asking to hear from supporters about what they would like highlighted in 2023, I knew I had to get in touch. In the summer of 2022, I developed a seemingly minor rash across my torso. It looked like heat rash which I have suffered from before, and as we were having a heat wave at the time, I thought nothing more of it. Until, that is, it changed and started to blister and spread across almost my entire body. At one point, it was only my face, palms of my hands and the soles of my feet which did not have blisters on.

Getting diagnosed

Initially I struggled to get a diagnosis. It looked almost identical to chickenpox, which I think is what confused my GP. After 3 months of suffering from painful blisters and unsightly scabs across my body, which take at least 2 weeks to heal, I eventually got a diagnosis thanks to having a biopsy taken by a dermatologist. Pityriasis Lichenoides.

Pityriasis Lichenoides is not something many people will have heard of as it is quite rare. There are 2 varieties: The first is Pityriasis Lichenoides et Varioliformis Acuta (PLEVA), which is more sudden onset and less persistent, and Pityriasis Lichenoides Chronica (PLC), which is milder and more persistent. It looks a lot like chickenpox but takes a lot longer to clear up. It is not contagious nor is it hereditary. The cause for developing the condition is not yet known. It has been reported to occur after a recent bacterial or viral infection and is thought to be the immune system overreacting to either source. There is no cure, it varies between clearing after a few weeks to taking months, and it can return throughout your life. There are some treatments for bad flare ups to help reduce symptoms, these include steroid creams, phototherapy with UV B or a combination of tablets and UV A therapy. Lotions and ointments are often suggested to help the skin be protected and to repair itself. In severe cases, immunosuppressants can be used.


Living with PLC

Having a diagnosis was filled with mixed emotions, relief at finally knowing what it is but also disappointment as so little is known about the condition. I honestly felt quite alone when in the midst of the flare up. It did not feel as though any of the doctors I saw were taking it seriously, mostly because I was otherwise feeling well in myself. My GP surgery were as helpful as they could be and I did get appointments very quickly so I cannot fault them in that respect. My husband was very supportive and found it hard that he could not help me.

It was an incredibly hot summer and that made my skin so uncomfortable. I did not want to leave the safety of my home and garden because I did not want anyone to see my skin and wearing clothes to fully cover up just made me hotter.

Having a diagnosis did not make me feel any less alone, I spent hours googling it and there is almost no information on the condition past the clinical explanations. No real-life stories from people who have first-hand experience. There is a Facebook group but this is not always encouraging as there are people who have had struggles with PLC or PLEVA for years, I do not want to think I will be one of these unlucky people. However, the group does offer some reassurance that you are not alone, and the members are always happy to share what has helped them, whether it’s a cream, diet change, supplement or one of the medicated options available. 

Moving forward

This is why I am writing about my story. I really hope that anyone who is suffering from PLC or PLEVA finds this blog when doing their internet search looking for some comfort and answers. You are not alone and you will get better!

I am lucky enough that 6 months on from the rash starting I am almost clear of it, I still have visible marks on my skin where the worst blisters were, but I am accepting of them because they are a vast improvement from the scabs the blisters leave. I am still getting the odd new blister but they are very few and far between thankfully. All I can hope is that it does not come back like last year. I have added in some supplements to my daily routine in the hope of supporting my immune system and reducing inflammation internally. If it does reappear, I at least know what it is and I can try one of the treatments offered. 

Katie Mason

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