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Any EPDS sufferers? (Erosive Pustular Dermatosis of the Scalp)
Another group I began following suggested I start a new discussion here. Any EPDS sufferers? I know you’re out there, Dr. Google has shown me pictures! We apparently are a very rare group struggling with this disease.
I am 73 years old with a long history of SCC and have done it all: Efudex cream, fluorouracil injections and t-Vec injections. My EPDS came as a result of MOHS surgery and a failed flap. I stressed both to my surgeon and my dermatologist that something was wrong but it was 4 months before I finally got a diagnosis. By then this horrid disease had already “eaten” a huge portion of my scalp. It is controlled for now with Clobetasol topical and Prednisone. Because of the Prednisone I am a cast of characters: Pillsbury Dough Boy, Jolly Green Giant Feet, Hunchback of Notre Dame and Metal Mouth. At best embarrassing. At worst isolating. I am slowly tapering off 60mg Prednisone and replacing with Dapsone.
I have so many questions! Is your treatment similar? How did your EPDS come about? Do you wake up every morning in fear of its return?
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The video I found on YouTube of a severe case of EPD is positively stomach-turning. We are in the same demographic- male, bald, over 70 with a history of sun damaged skin. I have had a handful of cryosurgery treatments, and electrodesiccation and curettage to take care of 4 spots, and then, 3 years ago, Mohs surgery on the crown of my scalp. It took about 5 months before the scar faded and the skin resembled a normal skin tone. Although, it has left a permanent dent on my scalp. Mixed in with my AK and SK has been dermatitis because of my oily scalp. I’ve been using anti-fungal shampoos for the last few years.
Recently I had a patch of bumpy skin on the top of my scalp (away from the Mohs) that started to grow. I went to my dermatologist, and without needing to do a biopsy, he could tell it was EPDS. He sees about a half dozen cases of it a year. He put me on a regimen of Clobetasol and Vaseline. Twice a day for two weeks, then one week off for the skin to rest, then another twice a day two weeks on. I went online and followed “good old” AI for a daily procedure on how to treat the lesion and remove the old Clobetasol and Vaseline.. I’m now 2 days away from using the clobetasol and the EPD has cleared up significantly. I used gentle shampoo (Vanicream) for the last 5 weeks, but am going back to my ketoconazole in a few days. One thing about Clobetasol. In the past, I have used it in ointment and cream form, but most recently I used it in the solution form, which doesn’t leave a residue. Just don’t let it run down your scalp and into your eyes. I guess my EPD wasn’t severe enough, because my derma didn’t think I needed long term use of Dapsone, so I just continue to wait and see. Also, like you, I wake up every morning and look in the mirror fearful that there is going to be a new eruption, since EPD has a fairly high rate of reoccurrence . It’s a terrible way to live. I hate hats, so I stay out of the bright sun. The night in my friend. Best of luck with your treatment.
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1 ReactionI have both ointment and liquid Clobetasol and you are so right, the ointment is a greasy mess. I alternate but use gauze pads with the ointment under a scarf or wig.
I started uploading photos to ChatGTP and “he” was pretty good at pointing out improvements and concerns throughout my EPDS reign of terror. He also was how I found this group.