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Any Disseminated Superficial Actinic Porokeratosis (DSAP)

Skin Health | Last Active: Jun 13 7:28am | Replies (31)

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Hello all. I am a 49 year old female recently diagnosed with DSAP and also learned that my father's sister was diagnosed a couple years ago, but likely struggled for years with getting the correct diagnosis. I love being outdoors, so emotionally this feels like a death sentence. I have a family and two kids in school and trying to rethink how to safely protect my skin while trying to live a normal life feels overwhelming at times. One of the hard parts of this reality is that it's primarily a cosmetic battle, so it's harder for others to understand. And isn't this just the weirdest? Anyway, I find it's also difficult to assess the risk/reward of certain activities. I struggle with how to LIVE my life but also not create a flare of any type. Just wanted to chime in to commiserate with others struggling with the "spots". Also, my derm actually has two other patients with DSAP so she was familiar with the Lovastatin/Cholesterol cream which I started three weeks ago. I do a field treatment on arms and legs twice daily (feels like a lot, but those were the instructions) but I am seeing a reduction in quantity and fading of many marks (some of which I didn't realize were lesions). According to AI and other sources, legs respond more slowly as the circulation, etc is just not as great as that in face and arms. Probably twice the time for legs to respond. Some of my spots are just flattish brown and some have the raised rim and odd middle texture. Not sure what the difference is. One piece of good news for future is the development of a new drug specifically for this - QTORIN by Palvella Pharma. Really interesting and worth digging into. Perhaps there will be gene therapy at some point and we can all just start over with some fresh skin cells.

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Replies to "Hello all. I am a 49 year old female recently diagnosed with DSAP and also learned..."

@ddb77 I tried both of the Lovastatins for 3 months with no results. I’ve been using La Roche Posay Cicaplast Balm B5+ (which is OTC) with good results supplementing it with SPF 70 since I’m in Florida. Virtually spot-free.

@ddb77 Yes, it is very hard to get diagonised and harder to find a derm that cares/knows about it. I had one derm that knew a little about it but he moved out of state. I have been dealing with this for many years. I would have places on my face that would get so bad they bleed. Those have been frozen off along with many many others. I stared using LaRoche-Posey gentle foaming cleansing oil for body wash. I had used Olay for many years and then the derm recommended Dove. Olay has a new Super Serum body wash that is good and cheaper than the LaRoche-Posay. I just started using the La Roche Posay Cicaplast Balm B5+ after seeing it recommended here. I also use sunscreen and wear clothing with sun block. I wear long sleeves and long pants year round. Nice to hear they are researching and may find a cure.