Photodynamic therapy (PDT) - Levulan, MAL, etc. reviews

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Photodynamic therapy (PDT) - Levulan, MAL, etc.
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Photodynamic therapy (PDT) - Levulan, MAL, etc.

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Photodynamic therapy (PDT) - Levulan, MAL, etc.

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Photodynamic therapy (PDT) - Levulan, MAL, etc.

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Full 6 month review
Reviewed on July 13, 2016

I waited a long time to post a review. I feel I can give a thorough pro and cons and long term results.

My background:

Female

Diagnosed PCOS (or misdiagnosed with some other hormone imbalance)

Slim/slender weight

Athletic high protein diet

Sever cystic acne since 11 years old

Prior to PDT I did the following:

Attained birth control (improved acne 30%)

Attained spirobolactone (anti testosterone) improved 40%

Adjusted to healthier lower carb diet and began weightlifting and running 4 years ago

Gluten and dairy elimination 4 month trial

Gluten elimination no noticeable difference

Dairy elimination: huge impact- worsened breakouts horrendously for 3 months before a night and day change of about 70% clear up

PHOTODYNAMIC THERAPY (2 treatments)

Incubation 90 minutes

Blue light 20 minutes

I decided to do photodynamic therapy due to persistent moderate acne, after the above treatments listed. My acne has improved tremendously since I was younger, however I'm on continuous hormone therapy, and it's been expected that I will struggle with this for life.

After my first treatment, the hardest part was staying inside and not being driven crazy by skin purging and peeling. I noticed it took about two weeks to fully recover. I had one small round of breakouts the second week, but had noticeably's little or no breakouts after the first treatment.

It's recommended you do 3 to 6 treatments, so I signed up for a second one. My second one I had complications. I was wrapped in a headscarf but too close to a window for several hours. Long story short I ended up with second-degree burn blisters all over my face. It was one of the most painful procedures I've ever had done; on the bright side, I had no long-term effects of the burn, and in fact in those places that blistered I haven't had a break out since. I wouldn't recommend sitting in front of the window because of the side effects or permanent damage, I just seemed to get lucky.

And total of only had two treatments and it has been the best choice I've ever made. The results in my opinion are that of Accutane or even better. I never did Accutane because of the side effects, this is an incredibly great alternative. Keep in mind everyone is different and you May need several treatments to see results. It also takes a long time to fully recover and let your glands produce oil differently (I'd give it 5 weeks before fully judging the results) I believe that because I had gotten the worst of my acne under control, I didn't need very many treatments. I plan to do one more photodynamic therapy treatment along with the fraxel laser in the upcoming months. I don't know if I necessarily need another treatment however it is recommended that you get three and my results have been incredible every time. I will try and update pictures as I figure out how to use my account.

It's 6 months later and I get a couple small surface breakouts when I ovulate. My makeup stays on for hours with decreased oil production, and I even got a pixie cut feeling more confident about my skin.

HIGHLY RECOMMENDED FOR ANYONE


Takes time but it works
Reviewed on June 27, 2016

i did pdt back in 2014 because my forehead was a mess i had to stop working due to depression . i had huge cyst that never got away , after the 3 sessions it took some time to my skin to get back to normal, it left me with scars (cysts were huge) but i was acne free for 2 years i mean not even a little pimple. its 2016 and some cyst are comming back probably due to my new job (high anxiety) but its not as bad like it was in 2013. i plan on going back on pdt really soon , if you have the money do it . (sorry for my english)


Finally something worked!
Reviewed on December 30, 2015

This treatment is not for the faint of heart as it is extremely costly (even with Kaiser Permanente insurance), extremely painful, takes down time, and lots of patience. But I feel my results were worth every penny, and ounce of pain and patience.

My skin type/problems: Oily, sensitive, enlarged pores, severe hyperpigmentation, mild pocking, cystic hormonal acne on jawline and chin, average acne on entire face.

My acne story: Through my teens, I had what I would call average/normal acne. When I reached my twenties my acne worsened, and when I reached 22-23 my acne was unbearable. It consumed my life and all of my money. Any of you who have struggled like I have, know what I am talking about. My acne was deep and cystic along my jawline and chin, it hurt physically and emotionally. Eventually, I started to develop scarring and severe hyperpigmentation too. No amount of makeup could cover it up, and I spent thousands on products to help before I finally went to a derm. I had severe hormonal acne due to contraceptive changes years prior. My body never recovered and years later I'm still working with holistic doctors to get it balanced out.

My derm tried me on antibiotics, Retin-A and many other topical ointments. None worked. He felt PDT and Levulan might be a solution. I started these treatments approximately 3-4 months before my wedding and had 4 treatments total. The nurse would clean my face with a wipe and acetone, and then applied the Levulan and I had to sit in the waiting room for and hour with it on. I would then be called back where they would put me under the light for 17 minutes. Then she would wipe off the treatment with water and apply a sunscreen liberally, and I would leave in a wide brimmed hat. We repeated this process every time.

There was no discomfort until they turned the light on. I would describe it as intense burning and pain, and it was most intense half way though the 17 minutes. When you come into contact with sunlight after, it activates the burning sensation again. The second day is the worst as far as pain goes. Slather on moisturizer and sunscreen and a hat, and stay indoors if possible. Aleve and ice packs help a lot too. If you come into contact with even indirect light, it will burn horribly, so stay out of the sun at all costs. Your face will be tight, swollen and puffy, possibly oozing, crackly and lobster red. This is normal. Day 3 and 4 is when the skin started to crack and peel. and I also had some white heads come to the surface. Day 5 was full of lots of flaking and peeling. Plan on not going to work if possible, no makeup, and no picking! By day 6 my face was smooth, however I had some puffiness and discoloration from the burn, again, this is normal and will go away. I would say a week and a half after treatment, is when my face would be back to normal. After one treatment in particular, I took longer to recover because I had some severe cracking and painful oozing because I had a different-than-usual nurse who scrubbed my skin too hard with the acetone. This caused a more painful and severe reaction. I would also say that with every treatment, it got less painful and things healed faster.

I saw no improvement after 1 treatment, my Dr. advised me of this. After the second treatment I saw some improvement. Less acne, some of my scarring was going away, my skin was tighter and refined, with less oil production.

After my third treatment, my skin was nearly perfect. Myself, the Dr. and the nurses couldn't believe it! They decided to do a fourth treatment so that my skin would be perfect for my wedding. After the fourth, I had no acne, most of my scarring was gone, pores were smaller, balanced oil production. It truly was a miracle treatment for me.

I finished the last treatment in May 2015, it is now December 2015 (I'm 24) and I still have outstanding results. I will get the occasional break out when I'm PMSing or not eating well. But it is not cystic and clears up fairly quickly. I also use Retin-A .05% or.1% to maintain my results.

I have read a lot of negative reviews on this treatment (even on this page) and realize that everyone reacts differently and not all will be cured with this treatment. However, I feel like a lot of the negative that people describe are normal side effects that do go away. I think doctors maybe misinform patients or there is a lack of information. I also think maybe treatment is executed improperly. And as mentioned earlier, patience is also key. You will not see results after 1-2 treatments, all 3 or more treatments need to be completed (which should take close to 3 months.) I think with proper execution of treatment, correct information given to patients of what to expect, and patience; people would be happier. Again, I know everyone is different and reacts differently, I just think there would be a higher success percentile.


So far, I am happy
Reviewed on August 16, 2015

I am in my 30s and have mild acne and Perioral dermatitis (not pretty!). Have been considering PDT for about 18 months and finally took the plunge last week.

My symptoms have been pretty much textbook, and now on day 5 I am starting to already see some nice rejuvenated skin appearing.

I think it is important to note that everyone experiences different levels of side effects / pain / redness etc. But I think its fair to say mine was moderate - severe.

Here is an outline of my journey so far:

Day 1: before bed I applied the cream (careful of eyes and washing hands afterwards) and slept in the cream.

Day 2: Careful to avoid sunlight - but did notice tingling as it was starting to be activated by light. Went under the lights. Was extremely painful for me. My clinic recommends 5-10 minutes of exposure. I only lasted 5 minutes, at which point the nurse felt is was activated enough anyway. Possibly the worst pain ever. Nurse did say depending on your skin it isnt always as painful. Felt like skin was burning/on fire. But I got through it!!!

Skin was red afterwards (like mild-moderate sunburn). Throughout the day skin got redder. Mid afternoon was very painful. By night it was like severe sunburn and my face was puffy and swollen. Eyes started to swell. Lots of pain relief, ice packs and lanolin cream/aloe vera/paw paw ointment. Some whiteheads appearing (4-5)

Day 3: Woke up with swelling around eyes. Still red and sore. Starting to flake a little. Lots of icepacks and lanolin cream today :)

Day 4: Swelling gone. Red, but no where near as painful. Lots of cream today. Starting to peel.

Day 5: Slight red (mild sunburn). Peeling and flaky. Feels tight. but not sore. Can see some nice new skin coming through. I think it will be worth it. Whiteheads still there but havent got any worse.

I guess I tell you the above so you know what to expect, but also that each stage doesn't last very long, and I think (hope) every part of this process is well worth it. Who knows, maybe your pain / experiences will be different to mine!


by HonestNat on 08/16/2015 23:30
Oh, and be sure to follow post care instructions. Mine included lots of water, hydrating creams, antiobiotics and a 6 week checkup.
causes scarring
Reviewed on February 28, 2015

I made a huge life altering decision to do the levulan PDT 5 days ago. Today I sit here with massive scarring around the temples and cheeks, more on the left than the right side. I sat for one hour after having the kerastick put on and then underwent the 16 minutes of blue light. It was the most intense pain imagineable. My face was so red for 4 days it was turning purple, swollen and burning. Before leaving the derms office we went over the types of light that would be safe to sit under. I asked about LED lights because I have a series of 4 LEDs that light up my family room under a ceiling fan. She said they were OK but flourescants not. BIG MISTAKE!

My skin around the upper cheek temple is like plastic with large fissures and hundreds of creases/wrinkles that look like a dried prune. THis is JUST like the skin of a burn victim. I fear this will not resolve and possibly because I was sitting in my family room for about 8 hours under the room LEDs. The left side of my face which is far worse was facing the LEDs. It wasn't till later I found out the Blue Light Therapy itself is from LEDs. I can only hope now that this scarring will somehow get better. My skin never did peel even after the massive burning. I would NEVER EVER do this again.


so far so good
Reviewed on February 15, 2015

I am 48 and have been suffering with severe acne since I was 12. Birth control helped tremendously but gave me severe migraines. I've been on many different topicals such as tazorac, differin, epiduo, clindimycin, (please excuse my spelling) Retin A, the list goes on and on. I've been on antibiotics my whole life on and off but they often lost their effectiveness, or caused gastrointestinal problems. I've had many different laser treatments such as cool touch, smoothbeam, all with disappointing results. I've tried to control my diet with whole foods, lots of fruits and vegetables, nuts, avoided processed foods, white flour, sugar, all the bad stuff. I've had chemical peels, microdermabrasion monthly still without the result I was looking for. I really thought at my age I would be done with this by now. I have to say that I believe there is hope now but I'm not sure it's with the PDT. Please bear with me as I tell you my story:

I just finished my second PDT treatment with similar results that were posted: sunburnt skin, purging breakouts, peeling, worse than ever acne, ect. While going through the process I felt like I needed to research other answers as my awful appearance motivated me to do so. It occurred to me that inflammation has been said to exacerbate acne. I started googling the subject of inflammation and came across an author that wrote a book and designed an app in order to assign each food an inflammatory rating either positive or negative. A negative number is for inflammatory foods. The higher the number the more inflammatory it is. A positive number is for anti inflammatory foods, the higher the number the more anti inflammatory. I bought the app and started eating the most anti inflammatory diet I could. It should be noted that foods you may think are anti inflammatory such as blueberries actually have a negative rating. They aren't bad for you. They have a lot of antioxidants but for whatever reason they are given a negative rating and considered inflammatory. One of the highest rated foods was cod liver oil with a positive rating of 1,061 for a tablespoon. Other foods with very high ratings were raw ginger, turmeric, garlic powder, anchovies, and many others. Since I started eating this way my skin has improved greatly! One could argue it's the PDT treatment (I'm sure my dermatologist would), but my skin didn't start improving until i starting eating in this way. As i researched, I came across someone helping to promote fermented cod liver oil to "cure" acne. I put two and two together and realized that the reason it might have helped some people is because of the high anti inflammatory properties that I found cod liver oil had on my food app. The name of the app is IF Tracker by Monica Reinagel. I really think eating this way could actually be the answer for me. I will continue PDT treatments since it's possible they could be what is actually helping my skin, but my gut is telling me that it's eating a high anti inflammatory diet. Whatever the answer is, my skin never looked better and I couldn't be happier! I hope this helps someone because no one knows better than me how difficult it can be living with severe acne.


HORRIBLE experience
Reviewed on November 26, 2014

I have suffered from severe acne ever since the age of 12. After trying every treatment product known to man (Murad, Proactiv, every possible acne medication sold by drug stores, etc.) my mother finally took my to the dermatologist when I was 14. I was put on tetracycline which I quickly became immune to and consequently did not respond to. My dermatologist - with a glamorous private practice in Toronto's luxurious Yorkville neighbourhood, recommended that before going on accutane, I try the levulan blue light therapies. Go figure she was so encouraging of it, each treatment costed upwards of 800 dollars. She recommeneded I do 6 sessions for a whopping total of nearly 5000 spent. My mom was so concerned about my self esteem and wanted to do ANYTHING to make it better, so went straight into the treatment without hesitation. The side effects were AWFUL. Not only did the treatment result in 48 hours of extremely red skin, but I was in agonizing pain. I remember crying in the car on the way to school in grade 9, not being able to smile or touch my skin. I later had to come home from school because I could not bare the irritation. I also could not be exposed to sunlight for 48 hours, which I found extremely depressing during my summer treatments. We're pretty certain that my dermatologist knew that I would ultimately need to go on accutane (which I did) and wanted to "rule out" all possibilities before having to go on the harsh drug. The treatments showed little improvement in my acne and the side effects were awful. For such an expensive, painful treatment, I was expecting incredible results. Unfortunately, my dermatologist was just ripping us off. Five years later and I've just started my second course of accutane as well as dianette, hopeful as ever. Acne can be stubborn and dehumanizing, but I am so lucky for my overall great health and have learned to accept this disease as less of a big deal in the grander scheme of things. Keep your chin up, we have so much to be lucky for!


NOT recommended for sensitive skin; Caused infection and scarring
Reviewed on November 1, 2014

I really want to warn people with acne-prone, sensitive skin NOT to consider this treatment.

I received two ALA photodynamic therapy treatments about two months apart; the last one I received about 5 months ago. I would NOT recommend this treatment to anyone, and especially not anyone with sensitive skin, because the first and second treatment did nothing to help my acne, and the second treatment caused me to break out into hundreds of itchy, red bumps, infected pustules, and painful cysts across the lower half of my face, which led to pitted scarring.

The treatments seemed to stimulate the formation of cystic acne in places I never before experienced cystic acne, such as my forehead, which also resulted in permanent scarring. I actually did not previously have skin that would easily scar, but after this treatment, my skin was more sensitive and prone to scarring. I am not sure why, but once the peeling process began with the second treatment (about 4 days in), my skin erupted into a terrible break out around my mouth, on my chin, and across my jaw like nothing I've ever experienced before. My dermatologist (who only emailed me in response to my concern) thought it was a "purging" effect, and I only wish I had gone to see someone else sooner because the reaction actually wasn't normal. After a month of dealing with a severe infection that I foolishly thought was "purging" and that I hoped would subside on its own, I finally went to see a different derm who prescribed me antibiotics. It cleared up in two weeks on the minocycline I was prescribed. I really wish I had gone on the antibiotics sooner.

Since then, I have been treating my skin with Differin cream which has cleared up my skin and improved the hyperpigmentation from scarring. Unfortunately, I am left with many boxcar and shallow icepick scars, though they have improved slightly over time. I am hoping over the next year I will see more improvement. Since my scars are quite shallow, I hope that at some point they won't hardly be noticeable. I am considering getting acne scar treatments once a year has passed from my initial infection (since scar formation and healing can take about a year).

I give this treatment ONE star because it can possibly be effective at facial rejuvenation. Some parts of my face responded well (upper forehead) and looked brighter and more uniform afterward. However, the majority of the parts of my treated skin did not respond well at all and made my skin more acne- and scar-prone than before. Please, do not waste your money. There have not been enough research trials to confirm that this as an effective method at treating acne for the majority of patients.


avoid Levulan, did not help acne and caused much permanent scarring!
Reviewed on December 13, 2013

I stupidly had Levulan done in 2010: In addition to not helping my acne at all, now I have rolling scars on any area where I have dry skin (both my cheeks from jawbone to eye). Also, I looked like a burn victim for 10 days immediately after the treatment and got sunburnt easily for months afterwards. This treatment scarred my skin for life and did not help my acne at all.


Worst acne treatment I have ever experienced on my skin. Horrible beyond words!!!
Reviewed on October 17, 2013

I have been fighting moderate/severe acne since late teens. Now I am 24 and still have breakouts now and then. There are days when my skin seems to be improving, then it once again drops back at being the usual nasty self. In other words, the same acne experience as most of us have. I have tried accutane (Roaccutane by Roche), it was amazing, my skin had never been so perfect before! Though I had a severe depression, apathy, suicidal thoughts as well as weight loss. However, back then I did not consider those "severe side effects", I made it through and got a beautiful skin without any imperfections at all! After more than a year my breakouts came back. This time it wasn't that bad, so I hoped to keep it under control by more natural remedies. Time passed and I got sick and tired of stressing out about my skin everyday, so my doctor advised this new "amazing, risk-free and side effect-free" method to help cure my facial skin. She said I would need 2 to 3 treatments. I read some stuff about this therapy online, the photos of people who had it done and the bad reviews did not stop me from doing it, somehow I got hooked and thought, let's give it a go! What a mistake!!!!!! At least that's what I think now. Some may say, you should go through all 3 necessary treatments before saying anything.. well, truth be told, it is the most horrible experience I have EVER had in my life. And I have had natural childbirth, so I know what pain is like. This is truly awful, I cannot even look at myself in the mirror. I had the Levulan thing put on my face for three hours on Tuesday (today is Thursday), then 15 minutes of intense burning under LED red light. I though then, I can handle this, it wasn't that bad. It stung and hurt, but it was bearable. Then the next morning came. My face swollen literally like a red Halloween pumpkin. Horrifying. Then by the end of day 2 the whiteheads started to come out. Millions of them, everywhere where the Levulan was put. Since it was only day 2, I though, oh, well, this will get better. Day 3 came. Nothing had improved, only got much worse. Even more whiteheads, everywhere, every square inch covered in them. I not only looked horrible, I felt much worse seeing my face in the mirror. I though I would get at least some improvement from this, but I have a feeling this treatment will make my situation worse. I did not even have severe acne before the treatment, just a couple of tiny spots on the cheeks and one or two occasional cystic pimples. Not comfortable, of course, but now I think I would much rather live with them, with make up caked upon them, then go through this hell once again. It's horrible, plus there is so much pain, I cannot even sleep at night, my face hurts as soon as it touches the pillow or anything really. I know, some might say this is only day 3, what are you moaning about???? Well, this isn't worth it. If it meant only one treatment and going through this hell just once for amazing results, I would probably stay quiet and just wait for it to end. Now that I know it is just the beginning of a series of self torture sessions, I am pretty sure I will disappoint my doc and refuse any further Levulan sessions. This kind of pain is only for the crazy ones who are really ready to punish their skin for being bad this way. Plus, everyone who says that acne must be treated from within, is totally right. All these topical treatments are just temporary (IF they work at all...). I know this might not be useful for anybody, since I am in the middle of the healing process still, but who knows, somebody like myself might be just as desperate and mad in this same situation.. and then this will be a small comfort to know that they are not alone in this hell!!! I will update next week, how my situation has changed.


by Kissofirish on 07/10/2015 13:05
How did your skin turned out?