In the spring of 2024, I started losing faith in my original dermatologist. With my inconclusive biopsies and my ongoing symptoms, she gave me a tentative diagnosis of Erosive Oral Lichen Planus. There are no FDA-approved medications for the disease. It can be difficult to confirm by biopsy and hard to treat. But, it seemed to most closely match my symptoms.
My dermatologist did not seem motivated to help me find a more precise specialist or do any research into treatment options. She also made me feel awful about myself. Every patient deserves to feel empathy and compassion, but her bedside manner consistently made me feel dirty and judged – like I had somehow brought this upon myself.
I talked to my rheumatologist and she said, ‘Let’s get you a new dermatologist. You shouldn’t feel that way.’
Dermatologist 2
In June of 2024, I saw a new local dermatology practice. They were generally on board with the lichen planus diagnosis, but they were more open to helping me find more effective treatments. They were open to referrals to teaching hospitals and next-level experts if they weren’t able to help. They were also kind and warm.
They helped me get approval to try Otezla, a medication used off-label to treat severe lichen planus. The medication costs about $5,000 a month, so it was miraculous that they were able to get it covered through my insurance.
Around this time, I found a Facebook group for lichen planus patients. I figured finding my ‘tribe’ would be good emotional support. Like any internet group, it was a mixed bag. There were arguments, questionable advice, and drama – nothing was moderated for accuracy.
Finding the real experts
The amazing thing that did come out of the group was a connection to research being done at UNC Chapel Hill Medical Center. I learned there was a team about to do an investigational study on a new medication for lichen planus. I reached out by email and had several detailed chats with the study participant coordinator.
In the end, I did not participate in the study for two reasons – 1) I did not have a confirmed lichen planus biopsy and 2) Participating in the study meant coming off all current suppression therapies – so, no Clobetasol and no Otezla. I just couldn’t go backwards like that.
I asked if I could see their doctors without participating in the study, and was told I would need a referral and that their team would review my case and let me know.
My rheumatologist submitted the referral and within two hours, I got a phone call. I scheduled a consultation in mid-September – just a few weeks of waiting. It’s the fastest response I’ve had from any provider over the course of my illness.
The UNC Consultation
We made the trip down to Chapel Hill for my consultation. It was such a different experience than all my other appointments. Their doctors had a scoring system for evaluating the severity of my condition, they wanted to look at all the ulcers (not just the ones in my mouth), they asked about my fissure and were open to that being a related issue, they asked about my mental state and my quality of life. They assured me they had seen ulcers like mine and other patients like me. It’s the first appointment that I did not feel like a total freak.
When I had this appointment, I was just several weeks into my Otezla trial. My mouth was looking maybe better, and none of my active ulcers were in locations that were suitable for biopsy. We decided to continue the Otezla and recheck my response at the end of twelve weeks.
A couple weeks after that appointment, something triggered a massive flare up of symptoms. I had painful open ulcers all over my mouth – and definitely in places that could be biopsied. I portal messaged the UNC team and sent a photo of the new ulcers. They replied almost instantly and said ‘Can you be here tomorrow?’
So, we headed back to UNC where I had two biopsies done, along with a couple intralesional steroid injections into my fissure. The doctor who performed my biopsies made the process easy and mostly painless. She told me she would be doing the pathology interpretation herself and would be in touch as soon as possible.
The very next day, she called me and said ‘We have a diagnosis! There’s good news and bad news.‘
I’m not quite ready to share details of the actual diagnosis. I’m still processing everything and preparing for treatment and my altered future. I also don’t really want to go into too many details until I start treatment and feel more grounded in this diagnosis.
How Weird 