be careful with Levulan (aminolevulinic acid)

Written by on February 15, 2006 in laser therapy, PDT with 7 Comments

Some good digging from Aurelia, this time on Levulan. Thanks for scouring the archives for us Aurelia. I know it takes quite a bit of effort to find and quote the most helpful posts.

Quote From: Levulan (was IPL resource page).

Hi Eric,Although there’s nothing about Levulan in the RSRP as yet, there is a lot about it in the RS archives.

When aminolevulinic acid (Levulan) is applied to the skin and it is activated by exposure to blue light or IPL, the treatment is called Photodynamic Therapy (PDT). Basically, it’s an acne treatment that might help some of those suffering from pustular rosacea and/or rhinophyma, but is probably not a good choice for the flushers.

To get an idea of whether or not it is likely to work for your symptoms, I’ll give you a little run through the archives, but please note that I’ve never personally tried Levulan.

Bridget Jones, the English rose who graces us with her presence occasionally, posted an interesting press release about PDT and rosacea a couple of years ago:

RSG Message 57116.

The group had just started to get excited about PDT as a possible wonder cure for fighting pustular rosacea, excessive oil production and rhinophyma when we were informed that one clinic was no longer offering this service because “most clients did not have good results.”

RSG Message 60202.

However, some RS members tried it anyway. A few reported successes, but probably more were dissatisfied. Abe (“ab60472”) said it had made his skin “10x worse with constant red and papules” & “Levulan damaged my skin and it has taken me a year and thousands of dollars to reverse it. Please, don’t anyone go near this stuff. It’s comparable to glycolic acid on rosacea skin, possibly worse, in my opinion. I have been in contact with another member of this board who also had skin damage from it.”

RSG Message 72508.

RSG Message 76099.

Karen (“karenkc101”) “The first set of IPL/Levulan wrecked my skin. Stay away from Levulan – it’s evil!! (at least for rosacea skin).”

RSG Message 76255.

Sue (“cyberpaint04”) was unsure of the initial results: “It’s quite a bit more harsh than ipl alone. My treatment was levulan followed by blue light then ipl, all the same session. I did not have a positive result from using levulan (3x), unless some results show up months later… I have had reduction in burning sensations, but don’t know the exact cause, could have been levulan, the ipl, or temporary reduction in hot flashes. Also you need to be aware that levulan is NOT APPROVED for any use other than actinic keratosis. Anything else is experimental, though many derms are using it, I don’t think definitive studies have been done or at least completed. Also, acne and papules can get worse because of this treatment (hopefully temporarily).”

RSG Message 67726.

It would be helpful to hear back from anyone who has been treated with Levulan, so we can know what you thought of it in the long run.

Kind regards,
Aurelia

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About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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7 Reader Comments

  1. Liz says:

    I had levulan and IPL tx on my face on April 2/08. They let me drive home 1/2 in the sun which I later realized you are not to do. Not post-instructions given. I had the tx for big brown spots and some blackheads. I now get cystic acne and have blackheads all over my face. They burned my face badly and i had little tic marks all over my face. I had a CT scan of my sinuses 9 days later – stupid. My face has aged by about 15 years. Those little tic marks expanded and look like wrinkles. My whole body went tanned, dry, edema, redness, itching. Within 4 days I could not work as a nurse anymore. My whole body was in severe pain. My skin on my body went loose and I was tanning through my clothes. People say it is impossible for Levulan to go systemic but anything can. If Levulan is originally designed as a cancer drug and you have ionizing radiation on top is this the result. I am undatable and my life has been ruined.

  2. David Pascoe says:

    Sorry to hear about your trauma Liz. We wish you all the best for your recovery.

    davidp.

  3. David Pascoe says:

    Hi Liz,

    There is a rare condition known as phototoxicity to Photodynamic Therapy. There is a drug in development that might be useful in treating this condition. It is not available right now, but I thought you might find this information interesting.

    http://clinuvel.com/en/corporate/clinical-applications/PDT/

    A google search for this condition might also lead you to some helpful information

    http://www.google.com/search?q=Phototoxicity+associated+with+Photodynamic+Therapy

    davidp.

  4. Julianna says:

    I had 4 PDT treatements done and it was the worst thing I have ever done to my skin. I have aged my skin 10 Yeats and there are now tons of fine lines all overy skin and I only 21. Has anyone else experienced this? I look at my face and want to cry from the damage that has been done

  5. Nick m says:

    I had severe cystic acne for most of my life. Accutane,cortisone injections anti biotics you name it I tried it. I visited a Madison avenue doctor for a consultation.
    He was a young hollywood looking dude dressed like he was ready for clubbing.
    I was sad a =nd depressed. He looked at me and suggested levulan with vbeam laser a series of three treatments. He told me ” Im going to completely clear your face, your going to look Like a million bucks when i get through with you.

    Boy I thought this must be the most cockiest bastard on the face of the earth, no medical professionals ever make garantees. HE DID!!!!!!!!!!!!!!!!!!

    After my first treatment , I cursed his ass out, I looked 100 times worse…….

    but after 5 days back to normal, well my normal.

    little by litte, my acne improved . big time. Finally a silver bullet for a life long struggle. Yes people it does work for acne if done by a M.D that knows what they are doing, stay away from boutiqe style spas after all , any one can buy lasers on the open market and open a laser spa. Dont do it !!!!!!!!!!!!!!!

    any way I found out I am actually a good looking guy, old friends passed me on the street because they havent seen me in a while and did not recognize me. I loved to see thier expressions, freaking shock and awe.

    completely acne free for three years, and suddenly I developed rosacea, never had it before never seen anything like it. I went for a touch up laser treatment and bang , my face blew up. levulan and rosacea does not mix very well..

    aint that a bitch, my silver bullet acne treatment the savior of my life, cant be used any more.

    so I have rosacea really bad and to top it off, MY CYSTIC ACNE IS BACK, And I cant do a damn thing about it.

    any suggestions?????

  6. Kristen says:

    I had Photodynamic Therapy (levulin with blue light and IPL) done twice for melasma, but all the discoloration came back both times so it wasn’t at all successful and I wouldn’t do it again.

    The first time I had major painful breakouts on my chin only and they only lasted a month or two, but I was warned it might happen.

    However, it’s been three months since my second treatment and I am having major painful breakouts all over my face. I am worried that my skin is not going to get better. Although I do still have faint red lines that mark where the levulin was applied, so my skin has not completely healed yet. Plus I had a really extreme reaction the second time (terrible pain and swelling for a week, and two weeks before I could go back to work or out in public), so maybe it’s just going to be bad for while.

    My laser technician has been doing treatments for eight years, and she told me that everyone reacts differently. She said my discoloration might not go away, that it might go away and then come back, or that it might go away for as long as I kept out of the sun. She said I might get painful breakouts, or that I might not get any.

    In the end it sounds like everyone reacts differently. And at $750 per treatment all it did is give me painful breakouts. From reading the comments on the internet it seems to help some people and hurt others…

  7. Anna says:

    I just had my second levulan treatment a few weeks ago. My face has never looked worse. After the peel I had horrible acne breakouts all over my chin and my face is still red and breaking out. I think I wrecked my skin. Didn’t realize I had rosacea when I had it done or else I would have thought twice. Cannot believe how bad it is and now I don’t know what to do.

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