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Any Disseminated Superficial Actinic Porokeratosis (DSAP)
Hello,
I’m an 82 year old senior with DSAP diagnosed in my early 30’s.
“DSAP is a non- contagious skin condition with apparent genetic origin in the SART 3 gene. It most often occurs in sun-exposed area of the body”
Over the years I have tried a multiple treatment modalities to no avail including the extremely expensive Lovastatin 2% plus cholesterol 2% (latest study suggests cholesterol may not be needed in the formulation) to no avail!
Have been using EFFUDEX 5% for years which has done nothing to mitigate multiple new lesions occurring resulting in extensive lesions on my extremities & back & to a lesser extent on my abdomen ,face & ears.
I would be very grateful to hear of any treatment that has worked for others in treating this condition
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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.
@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.
@robertlc1616
Tell me more about the Balm B5+. What did your spots look like and how many did you have? How does the balm treat the defect in the mutated pathway? Were you diagnosed with DSAP by biopsy? I'm asking questions because it sounds like you could have something different? I look forward to hearing more about how you use the Balm B5+
@ldean31
I'm so sorry to learn about your difficult experience. It can be very emotionally and psychologically draining to think about our skin so much. Do you have a new dermatologist? If you can find one to prescribe the compounded Lovastatin cream to you, you may find it useful. The studies showed most with definitive cases of DSAP did respond well to this treatment. The pharmacist told me it's all about being consistent in use because the statin is instructing the skin cell to respond correctly instead of malfunctioning.
@ddb77 DSAP runs in the family. My mother and sister had it. Ive discussed it with my GP. She prescribed the Lovastatin/Cholesterol Cream after I researched it. Ive also been on DSAP (dot) net before. Both upper surfaces of my forearms had the spots, mostly exacerbated by years of sun exposure. It was also examined by a Dermatologist who confirmed the DSAP. I had possibly 10-12 lesions on each arm. It became more noticeable when I tried a GLP-1 course, which I stopped after 2 months. The side effects weren't worth the minimal weight loss. My GP agreed. So I started experimenting with higher end lotions and the B5+ was noticeably different, and better. You only need a pea size drop on each arm usually twice a day. I supplement with a high-quality SPF 70 if Im going to be outside.
@robertlc1616
Were your spots pigmented brown at all? I don't have redness, but mine start as a dark freckle and hyperpigment into a cluster which look like large muddy freckles. Does the B5 just smooth the surface or lessen the pigment? Currently i'm experienceing smoothness and gradual loss of pigment from the lesions using the Lovastatin. It's the only treatment that affects the mevalonate pathway which is what the mutation affects.
No. No brown pigmentation, only red lesions. I don’t know all the medical details or terminology. The lesion areas would be scaly and itchy, especially if I didn’t SPF of at least 50-70 prior to sun exposure. The B5+ was a major improvement in the overall effects. Other lotions provided no benefit. The texture of the lotion was ideal since it wasn’t oily, sticky or slimy as many lotions can be and it blended in quickly produced a natural effect.
@robertlc1616 Well thank you for recommending the Cicoplast B5. I will be sure to grab that if I have any stubborn red ones at the end of my initial treatment phase.
Hi. The lovastatin plus cholesterol works for me. Weirdly because I have bad fatigue from another condition, I stopped using it. I tried it again the other day and it has already made a difference. Nothing else has ever worked for me.
Maybe those of us with a mevalonate defect respond and maybe a different pathway doesn’t. Extremely frustrating that it costs so much.
And a warning to anyone trying. It only works while you are using it. It clearly helps to heal the skin but the defect is always there - so mine returned when not using it. Like you said it’s very expensive.
What fascinated me was that I had to put it on my whole calves or it would have taken me hours just putting it on lesions. It made the rest of my skin feel “normal” which it never has before.
It would be so interesting to hear of any trials people are running re genetics etc. mine is definitely inherited.