Welcome to DSAP.net

DSAP - Disseminated Superficial Actinic Porokeratoses (porokeratosis)

LAST UPDATED: 5/17/12

DSAP is such an uncommon skin disorder that there is very little information available on it. I am not a doctor, but I've learned that amazingly (and sadly) the majority of Dermatologists either haven't even heard of DSAP or just plain can't recognize DSAP. General practice doctors? Forget about it!!!  I found this out the hard way, learning 6 years later that I had some of these genetically predisposed spots that are brought on by sun and/or ultraviolet exposure, and in some cases possibly by some sort of relaxation of the epidermal immune system. AMAZINGLY I had visited 1 family physician and 4 dermatologists over the years before I finally got the correct diagnosis. These various doctors MISDIAGNOSED it as a fungus, "nothing", seborrheic keratosis, folliculitis, actinic keratosis (AKA solar keratosis). One of my dermatologists amazingly even did a biopsy for cancer before concluding that my skin condition was "nothing".  Dermatologists most commonly misdiagnose DSAP patients as having actinic keratosis. I received one email from a patient who was even misdiagnosed as having lupus of the skin!  In my case the one doctor who finally correctly diagnosed me was actually unsure whether I had actinic keratosis or DSAP or a combination of both. I think it is a major error for a doctor to misdiagnose DSAP as actinic keratosis because AK is a more serious condition. After having misdiagnosed or even after having correctly diagnosing a DSAP patient, doctors will often put the patient on a topical medication called Efudex (AKA Fluorouracil, Fluorouplex), which only makes DSAP look horribly red and irritated for many weeks or months, while really doing nothing to improve the skin condition. After reviewing many emails and guestbook posts I have concluded that Efudex is an aggravating waste of time when it comes to "treating" DSAP. This medication was designed for Actinic Keratosis - Not DSAP. Carac is the newest variation of Efudex. While I am waiting for your reports on this drug, I am skeptical as to whether to expect anything different from Carac. Based on email reports from patients, I am of the opinion that you should also avoid any other medications that cause a harsh, red reaction (such as Tazorac, Retin-A, and Aldara). Based on feedback I've received, I have not heard one single report of these meds clearing up DSAP. I really don't know why doctors insist on prescribing these meds. Based on years of feedback from patients I have concluded that at this point in time there is no medication (topical or oral) that is really worth it for this condition. 

UPDATE: A recent treatment method prescribed by doctors is to use a combination of drugs such as Efudex and Tazorac. I'm still gathering information on whether anyone has any success from this, especially long term. A lot of time has elapsed since I heard of this combination being used so I would have expected to hear some success stories if there were any.

Also avoid Levulan light therapy or "Blue Light" therapy. Why? I've had only three reports on this treatment and they were both very negative.

There is one strange Internet report of an alleged DSAP patient's skin clearing from using Tacalcitol (scroll down the page), but I haven't heard from one single patient ever having success from using topical D3 analogs like Tacalcitol, which is usually prescribed for psoriasis. I can't even find this report on the Internet any more, which leads me to believe that I might have been a shameless attempt to sell medication.

AVOIDING THE SUN AND AVOIDING MEDICAL TREATMENTS MAY BE YOUR BEST COURSE OF ACTION!

One thing that really does help for DSAP improvement over time is simply using the strongest sunscreens and avoiding direct sunlight as best you can. I promise you will see improvement! This is especially true when you consider that when patients are first diagnosed with this condition, cosmetically it seems to be at its very worst. Often this is because patients had been hanging out in the sun with little regard for the need for strong sunscreen. Also avoid all of the harsh treatments described on this site. They will only cause additional cosmetic setback. I believe that some of the redness of DSAP is maybe a bit like the knees you scarred as a kid. It can take years for that redness to improve once you commit to giving your skin a chance to "recover".

And when combined with some creative use of sunless tanners you will actually find yourself looking pretty normal.

Current "treatment" for DSAP is only suppressive or palliative (to try to make appear less offensive) rather than curative. Most patients (especially myself and those with light complexions) will argue that these harsh "palliative" treatments (like Efudex, lasers, freezing, and others) are a waste of effort and will worsen your appearance short term and may even worsen your long term appearance. I have however read and received reports of people's varying degrees of improvement from deep freezing and from using laser treatment, but for every positive report I get a negative report from patients who tried freezing but wound up looking worse or no better long term. Accordingly save yourself the aggravation; If you decide to venture down the freezing or laser treatment route I suggest trying only a test spot or two to start. Read some of the guestbook posts in this site BEFORE trying any treatment. Email as many people as you can with questions. Again, people with very fair skin might be best suited to just avoid freezing or laser treatment.

Interestingly I have received two reports from DSAP patients who were delighted to see their DSAP spots "shed off" as a side effect from being on chemotherapy, but both reported that DSAP simply grew back a year or two later. Accordingly I am skeptical as to how ANY treatment can hold up over the long term. Getting rid DSAP spots (if at all possible) is certainly not as simple and easy as burning off a common wart. 

My gut feeling is that the only real DSAP treatment that will ever really work will emerge from an off label use of medication(s) intended for psoriasis and/or actinic keratosis, or emerge someday from proteonics (protein expression) or stem cell therapy. Hopefully some of you visiting this page have the time and energy to try to get a University research fund under way. One of the first hurdles in getting research under way is finding patients to donate DNA samples. Fortunately as a result of maintaining this page for over ten years I already have contact info for many DSAP patients. I would expect that a good number of these people would be more than happy to help in research studies if one ever materializes.

DSAP is considered a rare disorder so most dermatologists have little (if any) experience with "treatments". Therefore it would be wise to do your OWN foot work and second guess your doctor's "treatment" advice, especially if they want to put you on a harsh treatment like Efudex, or chemical peel or extensive freezing treatment without trying test spots first and waiting several months.  When first diagnosed, DSAP patients are often desperate to "try anything", and doctors feel compelled to at least "try something", however the best path may just be to simply make an effort to avoid the sun, wear strong sunscreen and take no medications at all, or maybe try "test spots" with various medications and/or freezing. Ask your doctor how many patients he/she has worked with. Just how knowledgeable is he/she? Does your doctor even know what DSAP is? It is YOUR OWN responsibility to find a knowledgeable doctor! Based on my experience there are very few who know their field inside and out. I believe that you might be best off finding an older (experienced) doctor who has practiced a long time and works out of an office with perhaps other dermatologists from whom they can get 2nd opinions.  DSAP mainly effects people of European decent (white people) so perhaps you might get better diagnosis from a Caucasian doctor. There seems to be too little knowledge on the disorder. Much of the knowledge that IS out there is clouded and confused. But after reading this page YOU might become more knowledgeable on DSAP than the vast majority of dermatologists! I have sorted through the mess (by scouring the net, talking to some doctors and many patients) and finally created this page to share my experience, and for all of us to gather info from around the world about DSAP. Bookmark www.dsap.net and periodically check back for the latest DSAP news.

I am conducting ongoing research for this site to assess the effectiveness / ineffectiveness of various drugs that DSAP patients have tried. In particular I am looking to survey LONG TERM effect, as some patients may claim initial "success" but later lapse back to their previous condition or worse.  Please contact me with your stories so that I can form better opinions to report on this site regarding "treatments", especially if you have tried Carac or a combination of Efudex and Tazorac or other combination of topical treatments, as well as if you have tried freezing or laser treatment.

SOME FACTS ABOUT DSAP

Analysis of DSAP shows altered DNA ploidy, chromosomal instability, and abnormal over-expression of tumor suppressor p53 protein. 

DSAP is characterized by annular (round-ish), dry patches (or lesions) that eventually become pigmented (red, brown) with continued sun exposure, and (from my experience) from scratching /picking, and time. In a perfect world doctors would be able to identify DSAP years in advance when only a few faint round outlines of DSAP are becoming visible, with no discoloration (or sometimes with even HYPO-pigmentation). Areas effected are usually sun exposed areas of the arms and /or legs. I've read about other areas of the body being affected such as the back and belly. It effects the LEGS of women more than men (I have to theorize that this may be from wearing dresses rather than from genetic reasons). In men it is said to effect the arms more (than legs). In about 15% of patients the cheeks of the face are effected, otherwise (oddly enough) the face is usually spared.  If a male patient has "keratotic" spots on their arms and / or legs but NOT on their face, a savvy doctor will pick up on this (as more of an indicator of DSAP than Actinic Keratosis). But don't rule out that AK (or DSAP) may be less prevalent on a female patient's FACE due to habitually wearing makeup (which can contain or simply act as a sunscreen). Nearly 1/3 of patients experience minor itching. For some reason DSAP is 3 times more likely in women*** (I have to wonder if this figure is off because men are less concerned with cosmetics and / or because men's hairy arms might obscure an otherwise unsightly cosmetic problem). The average age at which patients start to see DSAP become prominent is about 40. 

 

***If anyone out there is an expert on genetics then maybe you can answer this: 

Is it possible for an autosomal hereditary gene be 3 times more likely to be transmitted in women than men (as would appear to occur with DSAP)? If so why?

 

There is a phenomenon about DSAP that I have noticed (and so have other patients who have emailed me) and that is that the redness of DSAP spots always seems to appear rather suddenly.

 

This photo is owned by the name listed in black, and used here for educational purpose.

 

ABOVE: These are smaller DSAP spots. Perhaps 10 years earlier (or even just a year earlier), these spots appeared as nothing more than very slight raised borders (with NO discoloration) viewed only up close by a discriminating eye against a backdrop of light, and dry skin. The difficulty in getting early detection is that DSAP doesn't appear with hyperpigmentation (redness) until YEARS AFTER the accumulated sun exposure. While patients eventually take note of these raised borders as they become more and more defined, it isn't until a few years afterwards that the discoloration (shown above) seems to come on rather suddenly. People who have been so lucky as to be diagnosed very early on (before there is hyper pigmentation) really need to wise up to the fact that they need to make lifestyle changes and stay out of the sun starting NOW! There is a phenomenon about DSAP that I have noticed (and so have other patients who have emailed me) and that is that the redness of DSAP spots always seems to appear rather suddenly. Perhaps all in one summer it suddenly becomes a very noticeable cosmetic issue.

 

Larger spots typically aren't as perfectly round as this photo shows, and the raised outer borders are less defined in color in comparison to the slightly lighter centers.  Larger DSAP spots may more or less look a solid redish or brownish color, thus causing a doctor to falsely conclude that it's actinic keratosis. 

 

In most cases DSAP is inherited, but sometimes people develop DSAP (or at least have very high susceptibility to develop DSAP) when their immune systems are not working well.

 

Radiation therapy can severely exacerbate DSAP! You don't EVEN want to see the horrific photos of DSAP lesions that develop after going through radiation cancer therapy. If you have the DSAP gene AND cancer then I say radiation therapy is not an option. I say just kick the bucket in dignity (if all other cancer treatments fail).

Another disservice paid to patients by dermatologists is the failure to inform DSAP patients about hereditary factors. It is vital that family members be informed if a parent (or sibling) has been diagnosed as having DSAP spots! In the late 1960's it was concluded by a researcher that DSAP acts autosomal hereditary (meaning that DSAP is transmitted by an autosomal dominant gene). From my understanding of heredity, each offspring has a 50% chance of inheriting the DSAP gene if one parent has the faulty "DSAP gene". (And I believe either a 50% or 75% chance of gene transmission if both parents have DSAP). With these odds I'd say family members might like to know the risks!  Keep in mind that a certain level of sun exposure is required before the lesions appear on the skin. (For example: one may have the DSAP gene BUT live in long sleeve climate, or habitually avoid the sun, or habitually wear sunscreen thus NEVER developing DSAP spots or significant DSAP spots). DSAP is brought on by sun exposure BUT other factors may be involved. 

DSAP lesions have "thread-like" outer boarders, making them perhaps look sort of like craters on the moon when viewed at an angle against a backdrop of light. (Note: These "raised borders" are in actuality much smaller than sewing thread. Also the "thread-like" borders are much LESS noticeable when skin is wet from vitamin E, sun screen, etc. Skin should be DRY and oil free to really see the characteristic defined borders.) DSAP spots usually encircle pore(s) that are sort of "hardened", clogged, not functional, and stick up slightly.

CLICK HERE for more on DSAP diagnosis.

DSAP has been labeled as "pre-cancerous" but development of true skin cancer in DSAP is "uncommon" and in fact one study seemed to suggest that the only DSAP patients who developed cancer were those who very irresponsibly continued to be exposed to the sun. For most people DSAP is a cosmetic problem and a lifestyle changing problem but NOT a cancer concern. (note: I have received emails from people who have had DSAP for 40 years and been cancer free.) DSAP compares with actinic keratosis in which some spots can develop into cancer within 6 months.

I have heard talk of DSAP "remission" but it appears that those who develop DSAP slowly over the years do NOT experience remission. SEE DIRECTLY BELOW FOR MORE INFO on "remission".

I e-mailed a doctor who authored a web page that spoke of DSAP "spontaneous resolution":

MY QUESTION: Your article on DSAP reads "Protection from ultraviolet radiation may lead to spontaneous resolution." and "Lesions may resolve with discontinuation of ultraviolet exposure." I'm wondering just how rare or common this occurance can be. Have DSAP patients seen their skin clear up?

RESPONSE: Yes, DSAP patients have seen their skin clear up after exposure to ultraviolet radiation is discontinued. I cannot give you a percentage for resolution. The reports of this occurrence generally have a clear causal relation, eg. fair skinned European who goes to the beach for 6 weeks, develops DSAP, which then resolves after protection from further ultraviolet exposure.

MY QUESTION: 6 weeks? OK. What about patients who develop DSAP slowly over the years. Is reversal seen in these instances?

RESPONSE: Improvement is seen, but not complete resolution. Reduced risk of malignant
degeneration is the major reason to protect from ultraviolet radiation.

There are many variables to take into consideration when evaluating reports of treatment success or failure. Here's a few that come to my mind: 1) Everyone has different body chemistry. What works for one person might not work for 100 others. 2) Doctors perform differently (ex - when using lasers, freezing). 3) Patients may equate DSAP improvement due to use of medication when in fact it may have been an improvement simply due to sun avoidance. Remember that if you avoid the sun and wear SPF-100 you will see an improvement over time. 4) A patient's initial report of 'success" may be short lived. Clear or clearer skin may lapse back to the pre-treatment condition a few short years later. Medications like Efudex may cause threadlike borders of DSAP to diminish but only temporarily (as in my case). 5) In some cases I have to wonder if so called reports of "improvement" (from use of a medication) might only be due to the mere return to original condition (after looking at the harsh, unsightly effects of treatment for several months). 6) Patients can be misdiagnosed as having AK rather than DSAP and see improvement. 7) Patients with AK may have been misdiagnosed as having DSAP and thus reports of improvement (ex- from using Efudex) may be incorrect. 8) And finally one has to wonder if "successful" DSAP treatments are hoaxes posted by people who stand to gain financially.

Interestingly I've had a couple of patients report success with the yag laser as well as from freezing. The one who swore by freezing indicated that they had found a good doctor who was very skilled at freezing at just the right depth, whereas other previous doctors didn't go deep enough. The other patient who swore by the yag laser treatment was also pleased by how the laser went deep in killing off abnormal skin cells. This goes against some message board posts (that I read) in which some doctors had nothing but failure to report from use of lasers on DSAP. These doctors reported that the DSAP would just keep growing back. Furthermore I read of a skin graft experiment in which healthy skin was swapped with unhealthy DSAP skin. Unfortunately the DSAP grew through (like a weed that was not pulled out by the roots). The other location returned to normal as it was before. Now having heard this story it is hard for me to imagine that lasers or freezing would work.

I mostly get E-mails from patients who have tried all kinds of treatments to no avail. Some patients claim that freezing with liquid nitrogen seems to "improve" DSAP. Unfortunately lighter skinned people may be left with red scars. Recently someone told me that Aldara has been reported to "improve" DSAP. CLICK HERE FOR MORE INFO (or scroll down). Another patient saw their skin completely clear up from use of a topical vitamin D3 analogue (which is actually used for psoriasis). <SEE BELOW> This suggests that DSAP may not be just plain irreversible sun damage! New treatments for psoriasis on the horizon may possibly offer hope for DSAP. Some doctors believe that DSAP and psoriasis may be (to some extent) similar autoimmune disorders. Keep in mind that it came as an ACCIDENT when it was discovered that use of Topical Vitamin D3 Analogues (like Dovonex, Tacalcitol) helped in the treatment of psoriasis (read below). Who's to say that a DSAP treatment or combination of treatments can't be stumbled upon if we do some experimenting on our own with herbs and/or medications designed for other disorders (ex- Psoriasis)? This is why I am doing footwork of my OWN (when researchers won't be bothered with such a rare disorder). As soon as a new medication is approved for psoriasis (or keratosis, skin problems, etc) I'm going to call up my doctor to get the prescription and see what happens. Perhaps you may want to do the same. Let us know how it goes!!! In the mean time AVOID THE SUN and when outside be sure and wear sun screen AND long sleeve shirts! All too often I hear from people who are trying to find ways to remain active in the sun. It doesn't take but a little bit of sun exposure for DSAP to turn noticeably redder! I learned this the hard way while driving in my car for about an hour one summer in short sleeves while wearing SPF-50 sunscreen! If you can keep DSAP dormant (by wear long-sleeve shirts AND sunscreen) I have found that the combination of concealers and sunless tanning cream can actually have you looking acceptable in short sleeves (indoors of course).

DSAP patient skin cleared or not?

http://www.skinexpert.net/scientific/publications/psoriasis/tx_08.htm Disseminated Superficial Actinic Porokeratosis treatment with topical Tacalcitol - Markus Böhm et al., University of Münster, Germany, recently described a patient with DSAP whose skin lesions responded to topical tacalcitol. The 40-year-old woman had multiple, red to brown, annular, keratotic lesions, up to 1 cm in diameter, which were symmetrically distributed on the extensor surfaces of the upper and lower arms (see figure). The lesions had increased in size and number during the last 3 years and were unresponsive to topical corticosteroids, salicylic acid, and tazarotene. After topical treatment with 0.0004% tacalcitol once daily was started, pruritus (itching) soon ceased. Tacalcitol was well tolerated. After 3 months the lesions had faded substantially, and after 2 additional months they had vanished completely. <photos>DSAP lesions before and after topical treatment with tacalcitol 0.0004% over a period of 5 months. Webmaster's opinion: In looking at the photos I have to wonder if the doctor correctly diagnosed the problem. Is this really DSAP? It's hard to make heads or tails from these low-resolution before and after photos. These spots look brown, with no redness. Keep in mind that misdiagnosis is the norm. Or could this be a shameless attempt to sell a product?  If it was in fact DSAP then this is very promising because it suggests that DSAP spots are reversible! The problem is that I HAVE NOT HEARD a single report of DSAP clearing from anyone who used D3 analogues like Tacalcitol (or Dovonex, etc). And I've been running this site since 2000. Go figure. 

And here's yet another article that claims "successful" treatment of a patient with DSAP in Bulgaria using another D3 analog variant called Calcipotriol. Not sure what "successful" means. The article is from July 5, 2011 in the International Journal of Dermatology. The article was written by Ilko Bakardzhiev MD PhD1, Svetlana Kavaklieva MD2, and Georgy Pehlivanov MD PhD. I am personally skeptical of this report because Calcipotriol is supposed to be the same as Dovonex, and I have tried Dovonex to no avail.

This cosmetic solution really helps!

 

Brief overview of my "treatments"

Other "treatments" to read about:

 

Lasers, Liquid Nitrogen (AKA Freezing, Cyrotherapy) ?

Aldara

Dimercine

Fluorouracil (Fluoraplex, Efudex)

Accutane

Retin-A

Tazorac

Protopic (Tacrolimus)

Levulan / blue light

 

I haven't updated this page in a long time but here you can read about DSAP RESEARCH

 

MY NEW FAVORITE PRODUCT: This sun screen is 100+ SPF and more reasonably priced than previous high SPF sunscreens that went for $25.00.  It's very NON-greasy and Neurogena finally got it right by removing just about all of the "perfumey" scent that most sunscreens have. This product is also sold in most supermarkets and drug stores.

 

 

 

 

Try Apricot Kernel Oil (as a DSAP moisturizer). 4.6 ounces for $3.03 = a bargain! Pure and natural with no traces of solvents. For patients who experience itching, this might be worth a try.

Since you'll be staying out of the sun don't forget to chew on some Calcium + Vitamin D every day! These delicious chewable vitamins can be found at your local grocery store. I like to break them in half and then eat two halves a day. This particular product contains 500 MG of calcium plus 400 IU of vitamin D. Look for the chewable variety as Nature's Bounty also has plain old pills and capsules which aren't as tasty!

If you're a multi millionaire don't forget to leave a donation in your last will for DSAP research. I suggest donating to the UCLA School of Medicine or UC Irvine Stem Cell Reseach Center and specifically for the purpose of DSAP research or skin research. I am currently too busy to research how to establish a fund. This takes man/woman power!

Please email me directly and / or sign the guestbook....

This is the web address to the dsap guestbook...

 

Due to "spam-bots" I must post the link to the guestbook in graphic format so that only human eyes can read it. Simply add the forward slash, the "h" and the .htm and you will get to the guest book. Do NOT post any links to this webpage on the Internet. That would defeat the purpose of hiding this page from spam-bots.

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Click Here for DSAP information pulled off Emedicine's web page

CLICK HERE for information on upcoming psoriasis drugs! Some researchers believe that psoriasis and DSAP are somewhat related diseases. DSAP patients could potentially benefit from new psoriasis treatments.

LINKS to other sites:

www.dsap.freeforums.org - Another forum

Since 7/31/09