Face rash resistant to all treatment
Alright so not sure to post this in rosacea or here because the story of my face rash is long and confusing. My rash has been ruled as not rosacea, but I was told it’s rosacea my whole life. I AM DIAGNOSED formally with MCTD. As you know, a butterfly rash can be part of that experience, which I have. Since 11 years old, I have tried all rosacea treatments including topicals and orals. In my adulthood, I’ve tried V-Beam and BBL lasering (paid out of pocket, expensive). NOTHING I mean nothing has worked. The entire point of going through all of the standard “rosacea treatments” was to prove that they don’t work and my rash is not rosacea. Yet here we are, it’s still not gone, and I am steadily dismissed about my rash and condition. Despite being formally diagnosed with MCTD at a university hospital last year and having continuous ANA+ and RNP+, my current rheumatologist says: “I don’t know”. I’ve tried 2 different local rheumatologists, there are no more here, and travelled 7 hours to the university rheumatologist that diagnosed me previously. Even after a while, the university one that diagnosed me started questioning their original diagnosis because I was still having symptoms I dealt with daily (???). I don’t get it.
Has anyone else dealt with the butterfly rash, hot in flares, and annoying AF??? Been told it’s rosacea as a child and done everything to prove that it’s not? What do I do from here? The dermatologist literally told me that it looks like an autoimmune rash, especially since it spares my nasal folds. In case you’re wondering, an autoimmune biopsy was done last year on my cheek and it showed no cutaneous lupus. I was however told that I could have systemic illness that is affecting the vessels of my face but isn’t living in my skin if that makes sense.
I don’t know where to go from here. Nothing has worked on my rash and I’m getting nowhere.