Levulan / "Blue Light" therapy for DSAP?

The FDA approved Levulan for treatment of actinic keratosis (and for the face only). However apparently some patients are getting approval from physicians to treat DSAP with Blue Light therapy on their arms and legs. My opinion and personal assessment of this drug (as used for DSAP), based on feedback from 3 patients and one researcher, is to completely avoid this drug.  I have had three people email me with negative reports regarding their use of Levulan to treat DSAP. One patient  experienced promising improvement at first, but then about a year later reality sets in as the DSAP patient's skin returns to it's original state. The other experienced a worsening of DSAP. A third said that DSAP just went back to the previous state. This "treatment" is a painful procedure too! 

Someone has emailed me with a very promising report of another patient having great cosmetic success using Levulan to treat DSAP on her arms, after having tried all kinds of other medications and such to no avail. This had me excited. But shortly thereafter another patient contact me with some disappointing results. He lapsed back to his previous condition after what appeared to be initial optimism...

"...I have tried just about everything but have had no success. My last treatment was "Blue Light", which did make my spots less red and smooth. In fact, both my doctors were very optimistic as I was the same. However, my first time being exposed to the Summers sunlight, even though I used sunscreen, red spots reappeared as they were before and even spread to areas that were not affected before." - 06/28/02

Still another patient says that Levulan made their condition worse and biopsy revealed that it spread.

"I had treatment on my arms and legs and I have recently gotten a biopsy report that confirmed that the treatment actually spread the DSAP and now look awful to the point I can't wear short sleeves or shorts." - 7/18/07

And one more had this to say about "blue light" therapy of DSAP:

"That was awful. First of all, it really hurt. It felt like my arms were burned. The lesions really reacted to it; this made my doctor very happy at first because he was convinced that this meant they were about to die. But they didn't die. They reverted to normal. " - 2012

It is a 2-step process where first they apply the Levulan, which acts as a "photosensitizer", or light sensitive drug for the damaged cells. Only the damaged cells, which grow faster than normal cells, "soak up" the Levulan. You return the next day for light therapy using a non-laser fluorescent blue light source. This light therapy is supposed to take 15 minutes and is somewhat painful (a burning feeling). But at least for one DSAP patient it was well worth it. 

In the Levulan Actinic Keratosis clinical trial summary “Over 90% of AK lesions cleared with Levulan® PDT. The treatment was well tolerated, gave excellent cosmetic results and would be chosen by most patients if they needed AKs treated in the future. Again this was for treatment of actinic keratosis -- not dsap.

However someone claimed in a January 14, 2003 post that phototoxic reaction of Levulan treatment can alter the skin's DNA. In this regard there are potentially serious unanswered questions. So one should definitely first read up on the "cons" on this treatment before blindly jumping in to this treatment. Try only a test spot before you jump in all the way with this treatment! And PLEASE report back with your results!

One person I got feedback from said that one doctor told her, “We have had some very nice results treating DSAP -- most impressive.” Keep in mind that the last this doctor sees of his patients are follow up visits. This doctor probably never sees his patients a year or more later! I'm sorry but I trust the patient feedback I've received -- not one doctor's feedback.

If anyone out there learns of more doctors treating DSAP with Levulan then please report back! What kind of success have they had?

Finally I have to wonder why freezing and/or lasers wouldn't essentially achieve the same thing that Levulan does (and without the possible phototoxic risks that may or may occur).

Again I am not a doctor and my opinions are based solely on emails. My opinion is don't use Levulan to treat DSAP.