All posts from May 26, 2011 through September 29, 2012
26 May 2011
I can't express the importance of finding a Dermatologist that likes to treat hard luck cases. I have had good luck with Photodynamic Therapy with Levulan 3 treatments at 4 weeks while using Solaraze GEL. Please make sure that your doctor has the latest in light technologies. Buy the new UPF clothing. One more observation if my block doesn’t make me look like a ghost like Blue Lizard zinc it doesn’t help too much. I have worn the ultra sheer blocks and still get dark spots.
26 May 2011
To the post about Photodynamic Therapy with Levulan while using Solaraze GEL, how successful was the treatment? How far apart are the treatments spaced? I'm new to this site and this is my first post? Thanks Jess
28 May 2011
To those of you using A+D ointment are you using the using the diaper rash or first aid product?
01 Jun 2011
to maureen, was curious, have you been able to join the yahoo group? i still have no response !
01 Jun 2011
Hi - is this Joyce asking? Yes I was able to join the yahoo group last week. The moderator had me send pics and attest that I would read the site policy and learn to use the site and not expect to be shown, which I thought was fair. It's a good site with lots of information and very thoughtful participants. The moderator did explain that she was busy and tries to respond as quickly as she can. I am sure you will hear back soon! -Maureen
01 Jun 2011
I have seen a yahoo group mentioned as informative, what is the name of this group? Thanks Jess
02 Jun 2011
hi maureen, yes it's joyce. I will wait,hopefully she will accept me too. how is the imlan going?
03 Jun 2011
hey just found the site! I am in desperate need of advice! I have been diagnosed with dsap back in 2008, was using Differen, which helped very little. Does the A & D ointment really help? My primary dr's like whats all over your arms and legs!!!
04 Jun 2011
hey jess, the yahoo group is http://groups.yahoo.com/group/dsapskin/ not easy to join tough! joyce
04 Jun 2011
Thanks Joyce, Jess
09 Jun 2011
I am a 28 yo female with red hair and freckles. I spent quite a few years tanning in tanning beds and know that that is what brought on my DSAP. I have not been diagnosed with DSAP but know without a doubt that is what me and my mother have. I was told I have "nummular eczema" but that derm did not even look at my skin. I stumbled upon this site after days of researching skin conditions and finally I knew what I had!
09 Jun 2011
cont - I bought the Gold Bond Lotion with CoQ10, A&D ointment and the Nuetrogena sunscreen. My skin already looks better and I hope it continues to help. I'm back to using self tanners which I've perfected over the years anyway. I became obsessed with tanning at one point but now I don't care. Just want to enjoy my summer and take care of my skin. Will update on the Gold Bond and A&D after I've been using it awhile. Emily
09 Jun 2011
And just a quick thought - maybe someone should start a new Yahoo Group for DSAP folks since it looks like the current yahoo group isn't really active.
14 Jun 2011
Like so many others, I was diagnosed with a bad case of actinic kerotosis since I was 40 ( 20 years ago). I have tried every dermatologist as my legs are covered with what looks like measels and I live in Texas playing lots of tennis in shorts. I have tried 5FU, freezing, acid treaments, retin A and everything else listed.Glad to know it isn't pre cancerous though. I bought the freeze wart remover at targets and am using it for a few of the bigger, redder ones. Will see how it goes.
05 Jul 2011
How do you use self tanners? I have tried on my legs and it makes the dsap spots darker than the rest of my skin? Jess
05 Jul 2011
I see someone here says the Dsap Yahoo group is not active. I just joined, and have gotten two posts from members. Looking at the website, I see more than 20 posts made last month, and a handful so far this month. So, just fyi...it IS active. In fact, I see over 2000 posts dating back several years. Could you be going to the wrong site? I do see a forum mentioned here that is listed on "Free forums", but that group site was deleted due to inactivity.
05 Jul 2011
Hi Maureen, how's it going with the imlan creme? I used the A&Dfor months and although I had a slight change nothing drastic so I gave up :-( would love to find a way to get the red spots dulled down and the brown spots faded. Let us know how it's going. Thanks
17 Jul 2011
hey, see somebody asking about imlan.I use it now for about 6 months and it really 'bleaches' the spots. Not the new, very red ones, but certainly the other ones (pink/brown).most of my spots only the ridges are visible.Imlan is based on birch juice.
17 Jul 2011
I am a 59 & a white female with DSAP. My mother, sister and brother and my son have DSAP. We were told there was no cure and to stay out of the sun. I had 50 spots frozen off my lower legs by my dermatologist. I don't recommend that many at one time. My red legs took weeks to calm down. 6 months my legs look better. They are a little darker than my leg skin but they are smooth, not raised and rough and red. I wish they would come up with a treatment to reduce the redness.
18 Jul 2011
Wish we could get the Imlan lotion in the US!
18 Jul 2011
Reposting this since folks have been asking: This site has a product with the same active ingredient as Imlan (Betulin) which seems to only be available in Europe. The site is in English and definitely ships to the US: http://www.ecamellia.com/Hypoallergic_Birchen_Cream_with_Betulin-176.html (cont) (1 of 2)
18 Jul 2011
(2 of 2) I also found this: http://www.skinactives.com/betullinic-acid.html Which looks quite promising. Might be a more concentrated form of the Betulin? If anyone tries these please let us all know how it works! -Maureen
18 Jul 2011
Another very helpful person, Joyce, in Belgium recommends Argan oil. -Maureen
18 Jul 2011
Argan oil is readily available in the US, what has been reported as the benefits of using\ it?
18 Jul 2011
Maureen, how is it going with using the Imulan Creme? Any Luck? Thanks Roshi
19 Jul 2011
The benifits of pure argan oil is that it makes the ridges almost invisible, and the color of the spots is very light due to the use of imlan,so i have more than 100 spots on my arms and you can only see a few if you don't look very close. joyce
20 Jul 2011
Joyce - thanks for the information, what Argan oil do you use (brand)? Jess
21 Jul 2011
So glad (but discouraged) to find this website/guestbook. I was diagnosed with dsap in my early 20's and am now 67. My mother, sister, cousins all have it. No cremes have worked that I used as recommended by a derm who did say he didn't think anything would help. I sooo wish there is effective treatment. I will try argan oil and Imlan and see what happens! Paula
22 Jul 2011
The brand i use is Naturelle d'argan, the pure oil. Its a litlle botlle but you only have to use a few drops for one arm.The imlan you have to use for a few weeks (+/-3 to see the difference),but its not expensive! Hope it helps! joyce
23 Jul 2011
Hi Joyce and others: will try not to post this twice. I didn't hit submit but once then refresh but... I see that you are using both imlan creme and argan oil - how do you use it together?? one in am other in pm or?? thank you Paula
24 Jul 2011
I ordered Hypoallergic Birchen Cream with Betulin and will try this out. Jess
25 Jul 2011
Thank you for this site. I live in Arizona (yes way too much sun). After several docs over several yrs I finally went to Mayo Clinic. They biopsied and I have DSAP. I am trying several of your suggestions. My immediate question - Is waxing leg hair making it worse?
26 Jul 2011
Just had a positive biopsy for DSAP so I'm at the beginning stages of trying to see what works. Dr. has put me on Carac every other day for 30 days, rest 2 weeks and repeat. Based on the postings here, I'm not holding out alot of hope. Tara
10 Aug 2011
I just wanted to say thank you. I have had this condition for at least 15 years (starting in my mid-20s!) and NO one has been able to tell me what it is. Just having an answer, finally, is such a relief.
19 Aug 2011
Have you all joined the yahoo group? More up to date discussions there. Just go to Yahoo Group and search for DSAP Skin. Lot of folks there have found things that work for them to keep things under control. Seems like not the same things work for everyone, you have top experiment. - Maureen
22 Aug 2011
Just found out it's dsap, what a relief so my doc has me starting clobetas pro 2x day - we'll see !
03 Sep 2011
I am a 58 year old British woman with dsap for 10years. I've used aloe vera, thick moisturisers..calmurid..50/50..Eucerin.None
of which have any effect. It's getting worse and I haven't been in the sun AT
ALL. 
14 Sep 2011
I am 36 and have had DSAP since I was a teen. At first, it was just a few little spots on my legs and arms, and now they are all over my arms and legs--more on my calves than thighs. I went to a dermatologist several years ago about the hereditary spots (they run on my mother's side) and he immediately knew that they were DSAP and told me has an elderly patient that he sees for DSAP. Stacey
14 Sep 2011
I have been seeing my dermatologist annually at the end of summer to get a full-body skin check up. I had my annual appointment this morning, and he noticed that there were several actinic keratosis on my right leg (both shin and lower thigh) that he cryoburned. I would love to be included in a clinical trial for this condition if one is ever available! Thanks, Stacey
14 Sep 2011
I hate how they turn so red and look awful!!! I have noticed that repeated application of sunscreen helps minimize their appearance. After reading these posts, I am going to call my dermatologist to see if he will Rx me interal and external meds to try out. Thanks, Stacey
17 Sep 2011
Just wanted to say "thanks so much for this forum" I am almost seventy and was diagnosed with DSAP in my early forties by a female dermatologist, since then I have had to inform any dermatologist that I have been to that the lesions on my legs is DSAP. Would anybody know of a dermatologist in the South Florida area or even the east coast of Florida that is knowledgeable about DSAP, mine is inherited. Thanks so much, Debbie
22 Sep 2011
On my arms and hands I had small red bumps and they got larger and flattened out and are slightly raised. My lower legs started out as hard bumps under the skin and then got red and slightly scaly and flattened out and are still hard. I used Fluocinonide .05% and it helped a little--still red & hard. Has anyone used Tacalcitol, if so, what kind of results have you had?
28 Sep 2011
Hi, I am 38 and have had DSAP since my early 20s. Have >200 spots on each limb. Recently did laser hair removal (for hair removal not DSAP) and most of my spots seemed to have faded in colour. The raised rough rings are still present but are much less noticable because they are skin coloured. No idea if this is a temporary (have only been doing it for 8 months) or permanent. Anyone else had luck with this?
02 Oct 2011
Hi; I am 52 and was diagnosed with DSAP at 18. Like many patients, my symptoms worsened horribly between the ages of 40 and 41. I have tried freezing and several topical treatments. Nothing worked, but I did experience some dramatic improvement with a product called Psoriagold (a gel whose primary active ingredient is derived from the spice tumeric). Psoriagold, which was developed for psoriasis sufferers helps up to a point and then stops working.
03 Oct 2011
TODAY I CAME FROM MY DERMOTOLOGIST'S OFFICE. AFTER HE SAW MY LEGS AND ARMS, HE IMMEDIATELY DIAGNOSED MY CASE AS DSAP. I HAVE HAD THIS CONDITION FOR ABOUT 10 YEARS AND THOUGHT IT WAS SUN DAMAGE WHEN I WAS A KID (CALIFORNIA GUY). MY INTERNIST THOUGHT I HAD A BAD CASE OF RING WORM!!! I WAS PUT ON EFUDEX. THE PHARMACIST SCARED ME TO DEATH ABOUT HOW STRONG A MEDICINE EFUDEX WAS AND I IMMEDIATELY STOPPED USING IT. THANK YOU FOR WEB SITE.
Webmaster's 2 cents: Efudex would have been an aggravating waste of time. Good choice to lay off Efudex!
04 Oct 2011
I JUST POSTED 10/3/2011: THANK YOU FOR INFO ON 100SPF SUN BLOCK. WEARING LONG SLEEVES AND STAYING WELL HYDRATED SEEMS GOOD ADVICE. I CAN'T BELIEVE SO MANY PEOPLE HAVE THIS CONDITION. I SHALL RETURN TO THIS SITE OFTEN FOR ADDITIONAL HELP. THANK YOU. MICHAEL (VENTURA, CA)
05 Oct 2011
58 femail, diagnosed late 30's. Tried Efudex w/Accutane - appeared better when healed, but only in comparison to severe irritation from treatment. Also, no luck with Aldara. Best results liquid nitrogen, applied w/long q-tip, rather than spray.. more precise, easier to control,no scaring. Earlier post said Gold Bond Medicated and A&D ointment - now GB CoQ10 mentioned,not sure which is best. Appreciate if anyone knows. Thanks to all who shared. CJ
06 Oct 2011
Gold Bond CoQ10 has helped mine to some extent. I haven't tried the medicated lotion. I am using Solaraze gel now and will post if I see positive results. I also pray each day for strength and healing.
08 Oct 2011
Emily, Is your method for applying self tanner the same as recommended on this site? If not, will you please share your process? Thanks, CB
14 Oct 2011
Just recvd the name of my condition, DSAP. Although 20 years ago a dermatologist told me I had a hereditary skin condition and sun damage. I remember my father had the same spots and my sister has been recently treated for fungus. I am particulary interested in the use of liquid vitamin D. Especially since my vitamin D levels are always in the basement. Currently taking prescribed 50,000 IU weekly. Thanks for the info. Terry
15 Oct 2011
Carl: Thanks for all your work. I love the slogan "slip, slap, slop and seek" referring to slip on a shirt, slap on a hat, slop on sunscreen and seek shade. I also avoid the sun during peak hours of the day i.e. between 11 am and 3 pm, as well as wear long pants.
28 Oct 2011
I'm 44 years old and have had DSAP for 20 years, diagnosed as actinic porokeratosis 14 years ago, and DSAP 2 years ago. Lots of purple and red spots on mostly arms and legs. Lucky me, I also have been diagnosed by biopsy with discoid lupus a year ago and am on plaqenil tablets for this. My dermatologist can't tell the difference between the lupus red scaly patches and the DSAP lesions. Does anyone have the both and can give advice? Michelle
13 Jan 2012
Does anyone know of good Dermotologists in the Wash DC / Baltimore area who are familar / experienced with DSAP. Thanks Ed
17 Jan 2012
My husband who is now 70 has had this condition for 20 years and we were just about to go to another dermatologist for another opinion, but after reading your posts it seems it would be a waste of time. His legs are so ugly. Have just ordered some of the cream with birch and betulan from Germany (we live in Australia). Hope to see even a small result. Thank you for all of your posts. Makes good reading, albeit not much hope. Diane and Gordon
23 Jan 2012
SUSAN F here...my mom and I were talking and got to the topic of our ancestors (since this is a hereditary disease). Has any of your ancestors here ever had Smallpox??? My Grandfather had it when he was a child back in Poland in the early 1900's. We were just wondering by a long shot if anyone else's ancestors had it. DSAP bares a weird resemblance (all these rare spots) and since it was a terrible virus and there were no vaccines back then it stayed in the body...Just got me wondering
01 Feb 2012
Hello, My name is Debbie, I have had DSAP on my arms and legs for years, but did not know what they were until last week. One dermatologist who diagnosed them as solar keratosis and gave me Efudex to treat them. After 3 weeks the spots got red but did not peel off like a solar keratosis should. A second dermatologist said they were DSAP, I was misdiagnosed. I will be following you carefully to see if you find any treatments - Debbie Pini
03 Feb 2012
I'm 73 y/o male and diagnosed with DSAP 4 years ago. I have hundreds of raised red spots on my legs. These spots itch beyond belief. Had laser treatments which work for a short time. What works is stay out of the sun. I use Neutrogena SPF 100% and wear a hat, long sleeves, long pants. The red spots will fade to light brown spots which do not itch. If I go out into the sun for a very short period of time, the brown spots trun red and really itch. Benny
29 Feb 2012
Hi Debbie, I just finished treating three spots on my hands with Efudex for 2.5 weeks. I pre-treated them with tazorac .1% gel for two weeks. The result was that they scabbed up, peeled and are now healing. I've done this successfully numerous times. I originally did it in 2008 on a few areas of my quadricep and they are still gone. The process is a bit of a bear though. Am experimenting with tazorac/PDT right now, much more bearable, and am hoping it works. Colin Colin
21 Mar 2012
Hi, 59 yr old female, have had DSAP for almost 20 yrs.The only sucess I have had is Carac Cream,on my arms only. Applied for 6wks till my skin scabbed and crusted. It was painful,but, it did work on my arms. That was over 10 yrs ago, my arms are not perfect but I can wear sleeveless. Now,my legs... nothing has worked so far. Am now doing a laser treatment... will keep everyone update. Shar
30 Mar 2012
i was diagnosed right away with dsap...great doctor..told me right away was passed down in family on womens side and mostly women got it...not cancerous and not treatable...but reading this web page does help me to realize that i simply need to stay out of the sun
13 Apr 2012
For cosmetic purposes, try Sally Hansen Airbrush Legs. It covers the spots, and does not make them darker like the self tanners do.
25 Apr 2012
My dermatologist just put me on something new called "picato"...a 3 day treatment. Just finished day 3 and areas treated are pretty red and sore. Tried everything else.
19 May 2012
I had a few spots since my 30's. Tanned for years-had no idea.Got much worse last year during a time when my immune system was supressed. In 2 months went from having maybe 10 small spots on each arm and leg to having probably 100 or more on each arm and leg-bright red and purple-5% fluoricil did nothing. My mother/sister/grandmother all have. What is the best way to soften so self tan doesn't spot? Thanks
19 May 2012
Emily if you are still out there how do you keep the self tanner from sticking in the lesions and making dark brown spots-I use mystic tan (spray booth) any ideas? I really need to be able to wear shorts and sleeveless shirts it gets so hot here in summer-many lesions so treating each one individually will not work- thanks
21 May 2012
Can anyone tell me directions for the a&d ointment/gold bond coq10 treatment and the imlan/argnon oil treatment? Hoping for cure but if the aforementioned products would make them less dry so the mystic tan would not stick in them and or lighten the color would help-thanks
21 May 2012
cont'd -I can be reached at 
-please put "dsap" in the subject line so I know it's not spam-thank you
27 May 2012
One thing that I have found to "mask the dsap on my arms is Dermablend (for body with spf 15)cover up.Apply a good moisturizer before the Dermablend.I either use Amlactin or Perrins Cream Complete. Apply dermablend on a small brush,apply to spots,then pat to blend over the entire area. Nobody can tell I have these spots unless they are looking real close and even then most people cannot tell.
30 May 2012
I tried the Levulon treatment with Blue U light therapy. The incubation period was 8 hours for the Levulon. The treatment time was 15 minutes under the Blue U light. I have found the area treated to be free of spots. The treatment was completed two months ago.
01 Jun 2012
Hi, the Sally Hansen Air Brush Legs does seem to work well for women after a good shave and moisturizing....way better then the self tanner creams....i actually feel pretty normal....I also use it on my arms....it has a slight little sparkle to it..but overall very good product...it does tend to rub off on some clothing if you put too much on and don't let dry.
01 Jun 2012
To the person who obtained good results with Levulan and Blue Light therapy, did you do any other treatment along with this (for example fraxel). Thanks John
02 Jun 2012
I am the user who did the blue u treatment. Prior to this treatment I did a levullon eight hour incubation followed by an IPL treatment. I saw no results other than my age spots were lightened. I have tried effudex and sloaraze gel with no reaction. Amazingly, i got poison ivy and used a steroid cream which temporarily cleared my skin. I have been getting an airbrush tan to hide the spots in the areas I have not treated. This makes them less noticeable.
04 Jun 2012
To the levulon with blue light theraphy user: So the Levulon with blue light theraphy worked, but levulon with IPL did not work? Thanks
04 Jun 2012
I did the Levulan/Blue U treatment on my lower legs. I did the Levulan/IPL on my arms and legs. The Levulan/IPL made the spots less noticable and my age spots were diminished. But, it only seemed to work on my arms. I did the Levulan/Blue U treatment on the front of my lower legs. So far, my legs are smooth. Recovery was a minimum of 3-5 weeks.
05 Jun 2012
Thanks for the information re: Levulon with blue light
22 Jun 2012
I have had dsap for years and hae found that Gold Bond cream in the green bottle with the red cap is the only thing that works. My legs look the best now then they have for years. I put sun screen on everyday at least a 50 on my legs and that really helps
28 Jun 2012
Hi, Is there someone with experience of using Daylong Actinica from Spirig Pharma Switserland? And my spots are itchy as hell..what can I do?, I use Apricot Kernel Oil or Sheabutter to keep it greasy...but no help. I use also Dermovate Cream (which helped last year) and or Elocon..but nothing is helping anymore...I don't care anymore about the red spots I want to get rid of the Itch!
10 Jul 2012
41 year old male with DSAP spots on forearms and legs. Sun exposure sure makes them unsightly! Going to try the Gold Bond cream that worked for another sufferer. I'll let you know how it goes.
22 Jul 2012
I had the pulsed-dye laser treatment last week on my lower left leg to see if it would work. My leg looks black and blue, but it doesn't itch so far. I'll keep you posted. By the way, it was a well known plastic surgeon in Dallas that did it. (I have already been to 6 dermatologists.)
24 Jul 2012
I am 43 yr old female and have had DSAP for 7 yrs. I started using pure extra virgin coconut oil twice a day 6 weeks ago and my spots are 90% gone. The discoloration in the rings along with the rings have vanished. The oil is a bit messy but once you rub it in and wait 30minutes, it absorbs nicely. You can get the oil at any health food store or online. Try it, it's inexpensive & natural, so no need to worry about nasty side effects.
01 Aug 2012
A while ago someone posted about a Manuka cream, I live in new Zealand and would like to try it, can you please re post the full name and brand for me? Thank you, I'll also try that coconut oil!
22 Aug 2012
bonjour a tous, merci pour ce site, Je suis francaise. J'ai 58 ans diagnostique DSAP il y a 2 ans. Depuis comme pour vous tous c'est la guerre. Voici mon experience : creme tretinoine (vitamine A) : rien - traitement azote : efficace mais des cicatrices blanches ou brunes) impossible sur des centaines de points - ALDARA pendant 3 mois, traitement tres penible, enorme inflammation ( il parait signe d'efficacite?) 1 mois apres toujours rouge. Jocelyne
22 Aug 2012
sorry my message went 3 times. I nule computer and bad english. I will keep you informed of the results with ALDARA. My email adress 
23 Aug 2012
SusanF .. I have been talking with different doctors/dermatologists...has anyone out there known of a distant relative that had smallpox? They are thinking that there might be a link to a gene causing DSAP...please advise. We need a cure !
27 Aug 2012
A while ago someone posted about a Manuka cream, I live in new Zealand and would like to try it, can you please re post the full name and brand for me? Thank you, I' haven't seen anything so thought I'd post again Rachel
06 Sep 2012
Hi, just found this site and am so relieved not to be the only one out there with DSAP! It has taken 10 years to get a correct diagnosis and have tried many many things - laser, topical creams, freezing (which is leaving big scars) and I am devastated especially because I live in such a hot climate and cannot show my legs anymore. Thanks to you all for advice and ideas. By the way I am 44 and female. thanks, Paula
21 Sep 2012
2 months after end treatment ALDARA still very red. Best remedy : do nothing except avoid the SUN. 2 years without sunshine = BIG IMPROVEMENT no new spots and the old are no longer red JOCELYNE Webmaster's 2 cents: I couldn't agree more!
25 Sep 2012
I am surprised that nobody is talking about the importance of stress in the disease. All doctors have spoken to me and myself have found its influence in the exacerbation or no of the disease. what do you think ? A little calming to plants helps me.
29 Sep 2012
Cold and dry weather and stress can make the spots itchy and swelling and itching causes more and more stress...there you go