Firstly, I would like to thank you for all you have done to educate people about DSAP. It is wonderful. Although I wish I never had to visit your website, I am so thankful it is there for support. It has helped me tremendously.
Secondly, I was wondering if you wouldn’t mind answering some questions I have?
A little bit of background on my DSAP–I was diagnosed when I was pregnant with my first child in 2008 (I was 33 years old). I had probably 8-10 spots on my legs and that is it. I went to a dermatologist and he diagnosed me with DSAP right away. He told me to stay out of the sun but nothing else.
Fast forward 7 years with no flare ups and the original spots are gone–This past Jan. I had my first major flare up on my legs.I thought the spots were going away after treating them with Fluorouracil for about a month, but I recently had another flare up with more on my legs and now a lot on my right arm and a little on my left arm. I also have a couple of spots on my chest and my face.
I recently went to a derm and he told me the spots on my face are not DSAP. He said they couldn’t be DSAP because it doesn’t affect the face, and he told me they were freckles. I was very confused, because how do 5 freckles randomly show up in the dead of winter in New England? I am trying to do the Tazorac/Fluorouracil, but the itching is driving me crazy and while doing it I had a bunch more spots show up on my calves.
My question for you is, does this happen to you? It keep getting worse as you are treating it. I am just wondering if there is something deeper going on in body. I don’t understand how I go from literally nothing for 7 years to all of a sudden having them everywhere.My husband does have a terminal cancer, so I am under a tremendous amount of stress, but this has been going on for almost 3 years. It doesn’t make sense why all of a sudden it is happening so much right now.
Does trying to figure out what trigger the DSAP help? Are there any triggers for you? I also experience burns on my legs and arms from the creams. Does this also happen to you? Also, has yours ever gone away completely? Have you had a reprieve of time when you weren’t dealing with it? I read the results of the survey, and to be honest it was a little disheartening. Especially the part about the DSAP getting worse with age. I am 40 years old, and I can’t take it getting worse. It is very depressing.
I had my first spot appear at age 20, on my wrist. It was there for years. It was a single spot so I didn’t worry about it. Then when I was 25, in what seemed like overnight, my calves became covered with lesions. I went to a dermatologist, who didn’t diagnose it but said he knew what to d,o so he froze them off. They looked much worse and I was horrified.
As I’ve mentioned, I’m not a doctor, so just issuing those disclaimers before I go on. DSAP seems to be happening at the genetic level. Researchers found that there was strong evidence that the mevalonate kinase gene (MVK) mutations link to DSAP. Normal MVK could help protect epidermal cells from UVA-caused apoptosis (collapse of cells). In other words, a mutation in the MVK gene could prevent or reduce the cells’ defense against harmful rays from the sun. So, if you’ve had an outbreak “all of a sudden” this could be many years of cell breakdown and now you are seeing the manifestation in the form of lesions. You mentioned that you are dealing with your husband’s terminal cancer, and that again could be the accumulation of stress over time breaking down your defenses.
You asked if there are any triggers for me.
- Every year I probably get more of them and every year I have to learn to deal with them more efficiently. A couple of years ago I didn’t have any on my hands, now I do. So it’s just one more thing I have to do before I go out, put some concealer on them. I also could swear I have some on my face. So far they aren’t obvious.
- The other trigger is heavy exercise, they become red and inflamed, but that goes away.
- Also, when I was pregnant in 2011 my DSAP was the worst it’s ever been, but that’s not surprising. You have about 50% more blood in your body, so all of the spots appear more red and obvious.
You asked if mine have ever gone away completely. Yes and no. Some go and some come. I remember a time when I had some really stubborn ones on my forearm. Now they aren’t there but others are on other parts of my arm. But I have never had a time when they were all gone. The ones on my arms are easier to conceal. The ones on my calves are tricky, they are darker and don’t turn white like the ones on the arms. Rather they become purple (for me). I have to first moisturize and then I use DermaBlend to cover them up (here’s a list of concealers). It does the trick. Not perfect but good enough that I don’t feel self conscious. That or I’ve had it so long I don’t care as much.
Also, I’ve done the taz/eff protocol at least 4 times on my arms, so they are looking pretty good. I think I’ve nuked them all so they don’t look like dsap spots, rather whiteish discoloration that I can deal with. But like I said, the skin on the legs doesn’t react as well. Yes, after about day 10 of that protocol they itch like crazy. If you have the time, I suggest doing one arm at the time. Once I did arms and legs all together and I was super grumpy to say the least.
I’m sorry I don’t have better news for you. At this time there is no magical cure for it, just ways to manage. I remember years ago I had nightmares about it. I think I’ve come to terms with it and I don’t let it affect anything I do. Other than I can’t be quite as spontaneous as I’d like. If I’m going out in a bathing suit I need to put on the dermablend first and of course sunscreen.
Here are a few things that have helped me:
1) Getting into really good shape. I’ve never been over weight, but I certainly wasn’t (or am) a bathing suit model. But I’ve been doing pilates and eating really well on the slow carb & whole30 diets. Now when I look in the mirror I am beginning to see the faint outline of my abs! So while I don’t have the best skin in the world, I do have control over how much and what I eat and how much I exercise so I feel good in the clothes I wear. I would feel worse if I didn’t look good in my clothes AND had DSAP.
2) You may not be able to completely get rid of DSAP, but you can manage it. So do what you can. If you have’t tried all of the ideas in this blog, give them a go. I know you said the taz/eff protocol is painful, so maybe start with smaller areas. It has been the best thing I’ve done.
Here’s a picture of my arm when my arms were healing up from a taz/eff cycle, and here’s a picture of my arm right now, no concealer.
Forearm during Taz/eff Forearm about 1 month after taz/eff Forearm 6 months later
3. Using self tanner and concealer. I use Jergens BEFORE I apply the concealer. It helps to smooth the concealer on as waterproof concealers f are quite dry. This product is serving triple duty: It’s just the right amount of moisturizing, it’s a gradual self tanner, so no weird orange color or strong smell AND it’s SPF 20
Here is a picture of my leg before concealer and after. While not perfect, it does help my self confidence so I’m not embarrassed to wear what I want.
. Here’s another post I wrote that has lots of other resources you can try out. Again, none of them are going to cure it… just get you to a place where you are less horrified and hopefully learn to live with it and accept it (but still always be looking for that magic lotion or potion!)