NOTE: on July 18, 2016 I updated the tabulated chart at the bottom of this article so it is up to date. There are over 600 people who have taken this survey, the chart below reflects that.
People with DSAP are always seeking solutions to treat, or better yet, cure the disease. But there isn’t a central place where treatment options are presented in a comprehensive format. But now, In the largest survey of people with DSAP (almost up to 300 respondents) we ask the question ” which medical treatments have worked and which haven’t” We share those results here.
Notes
1. We couldn’t include results that were not specific. Many people could not remember the name of the medication they tried and just said “creams did not work”. Only responses that called out the medication either by the brand or medication name were considered.
2. If the treatment was considered successful or “sort of” successful we included it in this list.
3. Finally, after reading all 300 reports of treatment types it’s clear that what some people consider successful others think is a failure. Some people tried medication and it may have worked, but since lesions continued to return, they considered it a failure. Other people realize that nothing is going to cure the disease so the goal is to stay ahead of it. In other words, the medication is just minimizing the number of lesions not solving the inherent problem.
Allow me to editorialize here for a moment; nothing currently available is going to cure DSAP. So for now, the best we can hope for are tools to control the number of spots we have and to improve their appearance. For some people itchiness is something to overcome as well. Also, in many cases we’re dealing with the lesser of two evils. A treatment that has worked for me the taz/efudux protocol, removes stubborn lesions on my arms, but during the treatment is super itchy, red, scabby and horrible looking (Lasts 2-4 weeks) and the end result is smoother skin, no more lesions but a white spot. I prefer the white spot over the red lesion. Of course in a perfect world I would prefer lusciously gorgeous golden skin, but that isn’t in my cards.
Here’s the list.
1. Freezing/ Crotherapy was by far the most common and popular treatment.
60 people reported they have tried Cryotherapy at their doctor’s office or have tried the Home Wart Removal Freeze Kits. (read more about those here: Wart Removal Kits)
73% said that Freezing was successful
The biggest complaint is that most people have far too many to freeze off so can only freeze off the most bothersome ones.
2. Tazoratene/Fluorouracil (taz/eff) Protocol
13 people reported they have tried this protocol which you can read more about here.
85% said it was successful
The biggest complaint is that it is very itchy and may leave a scar or white patch. You can see some before and after photos here.
Note: People who only used Efudux/ Fluorouracil WITHOUT the Tazorac had a much lower success rate (only 40%) For some reason, dermatologists like to prescribe Fluroucail on its own without the Tazorac and this just doesn’t work.
3. Dovonex (calcipotriene)- a synthetic form of vitamin D used to treat plaque psoriasis.
Only 5 people tried it but 4 (80%) thought it was successful. One person said it worked even better when mixed with RetinA.
Medical References of Calcipotriene and DSAP:
4. Diclofenac topical (Pennsaid, Solaraze, Voltaren Topical). Solaraze is marketed to treat warty over growths of skin (actinic keratoses) on sun-exposed areas of the body. The others marketed for those with for arthritis.
50% of respondants said that this was a successful treatment. The biggest complaint was that it takes a really long time to work. One person said the main benefit is that it fades the red color of the lesion.
Medical References of Diclofenac and DSAP:
5. Photo Dynamic Therapy (PDT) Blue or Green Light
16 People tried PDT (The majority used blue light) and 56% said it was successful.
Medical References of PDT and DSAP:
- http://www.ncbi.nlm.nih.gov/pubmed/12472551
- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229068/
- http://www.researchgate.net/publication/10998555_Topical_photodynamic_therapy_in_disseminated_superficial_actinic_porokeratosis
6. Pulsed Dye Laser
Only 3 people tried this and 2 said it was helpful. Read more about Pulse Dye Lasers here: http://www.dermnetnz.org/procedures/pulsed-dye-laser.html
Click to Read medical references
7. Trichloroacetic acid (TCA) Peels
Only 1 person tried this and reported that it was very successful. Learn more about TCA peels here: http://www.chemicalpeel.org/tca/
8. Picato (ingenol mebutate) gel, is prescription medicine used on the skin to treat actinic keratosis
Just 2 people reported using Picato gel and one of them said that it was very successful.
9. Dexamethzone, a type of steroid medication. used for the treatment of many conditions including: rheumatologic problems, a number of skin diseases such as erythema multiforme, severe allergies, asthma, chronic obstructive lung disease, croup, and cerebral edema
Only 1 person tried this and reported that it was very successful.
Medical References of this drug and DSAP
9. Retinol
Seven people tried retinol in some form and zero said that it worked.
10. Imiquimod (Aldara, Zyclara) (for the skin) is also used to treat a minor form of skin cancer called superficial basal cell carcinoma, when surgery would not be an appropriate treatment.
Five people tried this medication and only 2 thought it was somewhat effective.
Medical References of this drug and DSAP:
11. Yag Laser- (neodymium-doped yttrium aluminium garnet; Nd:Y3Al5O12) is a crystal that is used as a lasing medium for solid-state lasers.
One one person reported trying the Yag Laser and reported that it was not effective.
Medical References of this drug and DSAP:
Read the full survey results here.
FOLLOW UP
Here are the tabulated results of about 600 people
Comments
- Neotigason in combination with VU-B verry succesfull. All the other treaments falled.
- I was in a research study for AKs and the Picato really helped with the DSAP. The strength that was used in the study is not on the market yet. My arm blistered and peeled for about two weeks, but it was worth it. My right arm is really smooth
- The treatment with Fluorouracil topical removed the spots and groups of spots I treated on my forearms. Other spots have appeared since, but it’s been about three years since the treatment.
- “staying out of the sun” = hasn’t helped
- Clobetasol sometimes works
- Acitretin with blue light – very successful
- Salicylic Acid. Unsuccessful.
- Chlorinated Pool Water-Works really well
- Zyclara. Amazing results.
If you haven’t taken the survey, please do. Click here.
What’s worked for you? Please let us know the things you’ve tried that have worked and those that have been a big disappointment!
Lorna,miraculous what you are doing! If you have DSAP,i feel sorry for you as a woman as it is devastating.I wish I could transfer it to me,but my is so bad that only death will end the problem.
The work you are doing is outstanding,how can you get this infomation out to dermotologist?? They don’t have a clue!
Later I am going to share some of my research from U.S,Chins Tawian,Russia(small pocket has DSAP-wierd,huh,must be inbred paleo).
Found on DNA that on the X chromosome locus 12 position contains the malvant ressive sex linked gene .duplicant-dominant-ressive-sex-linked gene from Mom. anyway I got it and your research may stimulant the Medical profession to take notice. Even NIH doesn’t have a clue. Maybe you can get a grant.
YOUR WEB-SITE IS FANTASTIC. WHAT A BUNCH OF WORL. GO “DSAP” GIRL.
I was in the marine corp and the VS’s don’t have a clue. I you want a mis-diagnosis ,go there.
semper fi
Yes, I agree! I can’t thank you enough for having all of this information in one place. I just took your survey and I am now attempting to go through every article on your site and cross reference what I have already tried.
Hello just wanted to add I have had DSAP for over 10 years and was misdiagnosed for 8 of those years.Recently I was put on Northindrone for fibroids and it just about cleared my upper arms probably around 60% my lower legs are starting to get there.Unfortunately this medication has side effects I hate but love the fact that this annoying ugly rash has faded significantly. Also using a little 2% Salicytic acid OTC acne wash is also helping. Has anyone noticed improvement from birth control pills like northindrone has given me?
Hi there, I am sick of DSAP. I am 44. It came on at around 39 and I had just been through a huge stressful burn out followed by moving and career change. Anyway, I have long suffered immune system challenges and am thinking of “going all out” to fix it (strict eating, meditation, etc). It seems logical that improved immunity will help and might make treatments more effective. Working against me is another genetic condition called krytopyrroluria which means your body rapidly excretes zinc (vital for immunity) and vitamin b6. Am curious to know if others have genetic conditions or nutrient deficiencies – possibly linked conditions or challenged immunity. Thanks for all your efforts on this site.
hmmmm… i’m not sure about genetic conditions, i am allergic to peanuts and I have a low thyroid. We have learned from the survey that a hig % of us have a low thyroid. I doubt peanut allergy has anything to do with it but who knows!
I have 2 rare primary immune deficiency diseases-hypogammaglobulinemia & hypocomplementcemia and porokeratosis. I have several known genetic defects and probably more not yet know. I just started getting serious about finding more answers and help for the porokeratosis- the itching is driving me crazy..
Hi DSAP institute – thank you for all your amazingly prepared information.
I have been diagnosed with DSAP for 12 months, and it is getting worse, and incredibly itchy, I can’t help scratching, and bleed, then scab like little spikes, that I have to scratch again.
My GP gave me a general anti-itch cream – modestly relieving.
My dermatologist mumbled that it is genetic, incurable and prescribed a cream that hurts open sores to apply (Retrieve Tretinoin 0.05% – I had to stop using it) – no strategy for further management (very disappointed in that)
1. I have been wondering if recent menopause and subsequent taking of HRT, which co-incides with start of DSAP, is a relevant cause factor. (should I stop taking HRT?)
2. Have also been wondering if autoimmune status is relevant. About 4 years ago, I was run down working late, and not sure if its connected, but got Stephen Johnsons Disesase (a rare serious skin disorder possible autoimmune related). Now gone.
Due to my frustration with incredible itching, blood spots on my clothes and sheets, late night baths in epsom salts to get through the night, tonight I created a survey monkey of my own (see link below), before discovering this Facebook page. Let me know if you think it’s redundant due to your comprehensive survey on treatment. https://www.surveymonkey.com/r/ZBSYH5V
(Asutralian – 52 yrs – diagnosed at 51 – very fair skin – always worn hats etc – Southern hemisphere)
PDT therapy was a life saver for me. The first treatment didn’t work well at all. The technician told me to come back that she had an idea. When I went back she wrapped Saran Wrap around my arms after treating them with “the stick”. I waited the allotted amount of time and then was put under the lights. 1,000,000,000% better. It actually cleared
my arms of the biggest thick lesions that had been growing for 20 years. If you are doing light therapy or if you have had it done with little to minimum results try this method. What do you have to lose.
Sherry, would you please expound on your treatment? Like specifically what are the EXACT steps and treatment you had? What is “the stick” exactly? Allotted time? What color lights were used? Was the Saran Wrap off for the “stick” (?) treatment then on your arms with the light/PDT treatment? How long under lights? Also, what a wonderful technician to think harder to try to help you. I’ve yet to find anyone who “thinks harder” than how they were trained initially. Where’s was your treatment? Thank you for sharing and please forgive my multiple questions, but you’re the first person and current (2018!!!!) to have given me hope.
Hello fellow DSAPPERS! I had PDT on 4/23/18 for DSAP and keratosis. My therapy consisted of a 1 hour session of Levulan (The Stick) applied to both arms and wrapped in plastic wrap (wrap is removed before therapy). I underwent Blue light therapy for 16 minutes. There was a small amount of tingly pain during the process. For the next two days my arms were sensitive to most light. I kept my arms covered during this time, otherwise I would feel some burning (Oh, I did not take time-off from work and I work both inside and outside…if that matters to anyone). My arms were red, especially at lesion locations. The keratosis reacted well but the DSAP did not. After 2 days, my arms went back to their normal look/condition. I spoke with my Derm Dr. the follow week and told her I had only a slight reaction to the therapy (Showed her pictures, make sure you take before and after treatment so you can compare). We agreed to perform the therapy two more times at 2 week intervals. One change we made was that I would shave any/all hair from my arms before next therapy. I figure it is worth a shot to try again. BTW, I’ve had DSAP for over 15 years and I am religious about staying covered up and applying sunscreen when needed. I have DSAP on my legs too. Unfortunately, the DSAP seems to be more pronounced and visible as I age. But aging is good, right! I will try to get back to everyone with my final results which should be by the end of May. Hope this info helps. TTFN!
I’ve done all of the creams, ointments, etc. (Tazarac, Effudex, Solaraze, — ALL of them) and none of them helped my DSAP much. Last summer I tried the Levulan/Blue Light Treatment on my arms and legs. First round did not help. Did a second round with the saran wrap and longer incubation time and I got no results from it either. I’m seeing a different dermatologist now and we are going to try the Oral Acitretin to see if it helps. It is an extreme measure to go to – but I am at my wits end. I hate these spots on my arms and legs.
The verdict is still out. Back in a few weeks.
Unfortunately, blue light therapy did not work. I ‘m glad my insurance paid for it only because I had already maxed out my deductible and out-of-pocket. Clinic charges $3,400.00 a treatment times 3. Insurance paid 60% of that and they called it good. So, definitely food for thought. My thought is, they already knew it would not help. Live and learn. Next for me is….. buying a $20 red light bulb and screwing it into a lamp and do my own therapy. What the heck do I have to loose. If I see any improvement I will let you know. Until next time! Stay covered up! Matti
Hi, I have tried all the treatments out there for DSAP. I am currently happy with the TCA 15% peel. My doctor has done that 4 times over 4 months. I am now on my 5th peel of the revitalize Peel by skin medica. These 2 treatments have made a very big difference in the smoothness and pigmentation of my countless DSAP spots on my arms. It has not been a pretty 12 months. But they are looking much better I think.
Thank you so much for this website. I am 55 years old and until now felt very alone with this skin disorder. It’s helpful to see what others have tried. It gives me hope to keep trying new remedies. I noticed some people with DSAP have a sulfa allergy. I am allergic to sulfa, as well. I wonder if there is a link between the two. I have been very depressed with this condition especially in spring and summer when I can’t wear pretty dresses or shorts, but I hide my depression from my family and friends. I’m also embarrassed to let my husband touch my scaley skin….I’m afraid deep down it makes me unattractive to him. Thanks for giving me an outlet to share this.
Deb- I have DSAP as well and also a sulfa allergy. Very interesting connection.
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