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  • first post - help!

    Hello everyone,
    this is my first post here, i'm kind of scared and need some serious support.
    It also goes out to anyone considering a photodynamic treatment .
    i went through a photodynamic therapy 2 days ago (or should i say Levulan?)
    i really fear something went wrong.
    right after the 2 light sessions of the treatment (which were bearable yet quite unpleasent ) i've become, as expected, red like a tomato. (i'm usually very sesitive to the sun)
    Made my long way back home with a very strong burning sensation + my face got really swollen. not just around the eyes and mouth, everywhere. the first night was ok - i drank a little beer and put on some ice and Celendeel according to doctor's orders. (which is a soothing gel for mild burns containing Calendula, Aloe, Vitamin E, Alchohol).
    When i woke up yesterday and went to the mirror i noticed small white blisters covering my whole face. having not read about such a side effect i callled my doctor, she said it was perfectly normal. i washed my face and kept on with the calendeel (just about 2 or three times), until i could hardly move a musle - a horrible dryness. i decided to stop with the Calendeel, and continued with the ice) . Evening came along and I've felt awful - fever, tiredness, burning sensation, headache. i went to the mirror again, things were much worse; the blisters grew huge and spread eveywhere like sort of a biblical curse... some them popped against the lightest touch, oozing some kind of liquid. I called my doctor again - she said, again, that it was normal, but she admitted i may have reacted more severly than other patients do and that she would see me tomorrow if i insisted. (it's a two hour drive and i'm still photo-sensitive ). Last night was tragic. Felt like in a nightmare- everytime i woke up (maybe a hundred times ) i could feel the pain.
    Today my face burns less, instead the dryness is really unpleasent. I went to the mirror and got really frightened - i look like Freddy Krueger or something. most of the blisters have become a single huge scar tissue, and underneath, in locations it had peeled off you can see this oozing stuff. spooky!
    I thought about going to the hospital. I dunno, maybe she burned me too much??
    how do i know i still have a normal face underneath all this? maybe i'm scarred for life?
    really sorry you have to withstand this panic attack. but i got no one else to turn to.
    maybe it was a big mistake?
    i forgot to mention i've stopped with the ice since it sticks to the mess.considering your experience - what do you think i should do?

    thanks. Jonathan.

  • #2
    Jonathan,
    I don't know anything about Levulan but I am very fair skinned. Once when I was about 18 and at college, fell asleep (well, passed out would be a more accurate depiction- good times) in the sun in New Orleans where I went to college. Got fried on my face- literally. Looked very similar to what you describe. Literally burnt my face so badly I had blisters- much like what you described. That was 20 years ago so I don't remember how long it took to heal, etc. but suffice it to say it did indeed eventually heal.
    I would suggest that you have a burn from the photodynamic therapy. It will have to heal like any other burn. I think you can relax. While it will suck and take time to heal, I think you will.
    Best,
    Rob

    Comment


    • #3
      Jonathon

      I am so sorry that you are going through this by yourself.

      Do you have rosacea? The reason I ask is that people with rosacea tend o react more violently to things. She may well have left it on quite long and so you have suffered what Rob describes, a burn.

      The main thing now is to try to protect the skin from any more harm and so I would suggest that you a:

      Sleep with your head elavated and so that it doesnt move around ie lie on your back not your side.

      Take some photos of your skin and send them to the person that did the treatment and ask what they advise.

      Dont put anything on your skin and certainly dont poke the blisters.

      Make an immediate appointment with your doctor and ask whether there is perhaps and antibiotic cream that you can put on.

      I would say that your skin is going to continue looking bad for another few days and then hopefully the blisters will go.

      When I have laser Dr Crouch gives you an antibiotic gel incase I get a blister. I am sorry but I cant remember what it is called though. Do you live in the UK- I would be happy to send it to you first class if you like as I have never had to use it.

      Comment


      • #4
        Thank you Rob for your comforting words, and Phlika for the generous offer.
        There are some good people out there.
        unfortunately I don't live in the U.K (and the antibiotic cream is not the only advantage)
        do you reckon I need a doctor's perscription for this kind of cream?
        picturing myself and sending to a doctor is a good idea.
        again - thanks!

        Comment


        • #5
          Not sure of how the system works in other countries, sorry. I would advise seeing a doctor as it may be beter to leave well alone if they are open blisters now.

          Would you describe your face in detail (or post pictures if you want)?

          Comment


          • #6
            Well, I'll describe my face in words at the moment for I don't have my camera with me:
            It is now covered with white blisters. small ones but many on the forehead, most of them are dry blisters. my chicks and nose have become a single layer of yellowish dry crust.
            I fear that if i peel it off it would cause damage. I can barely open my mouth.
            it is not painful anymore to stress facial muscles, but it's extremely hard (therefore I've barely eaten since wednesday) plus now it itches - which i figure is a good sign.
            i'm trying not to yawn (and have very little to smile about at the moment) so i don't dissemble the whole thing and wound myself.
            And for your question - Yes I suffer from Rosacea --->

            Comment


            • #7
              Hi Jonathan,
              What a terrible ordeal you are going through and I'm so sorry.
              I would recommend (with it being Friday and all) to get yourself checked out by your doctor before the weekend. Since the doc who did the treatment on you is so far away perhaps you can go to your internist or gp for eval and treatment with an antibiotic cream so the wounds don't become infected. There are OTC creams you can buy but since your condition sounds rather extreme I think it best to be checked out by a doctor.

              Having said that I agree with Rob and Sarah that you will heal and it will just take time. That doctor may have been a bit too aggressive and rosaceans have very sensitive skin. I take it she didn't do a patch test which is usually a good idea to play it safe. Anyway, I would feel better if you could get yourself to a doc today just because you can't be too careful and better safe than sorry. At the very least you can get some medical reassurance (as we are not doctors and can't tell you the right thing to do for sure in this case) and treatment. Good luck and do let us know how you are doing.

              Best wishes,
              Melissa

              Comment


              • #8
                What ever you do dont pick or peel of any scabs.

                As for food how about eating some soup (though a straw if necessary)?

                It may be that there is a cream that will help but as Melissa says this is definitly one for a doctor.

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                • #9
                  Thanks Melissa and Sarah.
                  You're right I should've gone in the morning now it's too late (I'm an Israeli our weekend starts a day earlier).
                  You are most kind.

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                  • #10
                    OK Jonathan then just take it easy and drink plenty of fluids, rest, and do not pick at your face. Just leave it alone but if you could get a friend to pick up some kind of antibiotic cream that would be good. That's so any open wounds do not become infected. And first thing Monday try and get yourself checked out by a doctor. Hopefully you will see some improvement over the weekend and try and not to get upset as the human body has an amazing capacity for healing. BTW The doctor who did your treatment must have some sort of responsibility in this so should give you a phone number in which you can reach her in case of emergency. Weekend or not.

                    Take care of yourself.

                    Best wishes,
                    Melissa

                    Comment


                    • #11
                      Yes do as Melissa suggests....get her emergency # and INSIST that she call in a prescription strength antibiotic topical! OTC may help but prescription strength is much better....also these topicals will give you some moisture which a burn is in serious need of....that original cream she gave you would have made me burn and flush also even thou I never had a tx like this!
                      Dx 1998

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                      • #12
                        I'm so sorry you're going through this! How long was the Levulan left on? I agree with the other posters in that it sounds like it was left on the skin too long and burned it. I once dried my skin out so badly that I could barely move my face. First the skin hardens and things become even harder to move, but then the skin slowly flakes off and is fine. Everyone else has given good advice -- just be as gentle as possible and I'm sure things will heal.

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                        • #13
                          Thanks Lauren, I got some good advice from the members indeed
                          The cream is called ALA which stands for Amino Levulinic Acid, after the doctor had put it on my face, she sealed everything with a mask and told me to come back in four hours.
                          Up until now I was certain that the reason for my over-reaction was the "light sessions" themselves. She told me it would take 16 minutes with a small break after 8 minutes.
                          When the whole thing was over she looked at my face and said " I wanna give another 2 minutes". Does anyone know how long it noramally takes?

                          Comment


                          • #14
                            Originally posted by ice age View Post
                            Thanks Lauren, I got some good advice from the members indeed
                            The cream is called ALA which stands for Amino Levulinic Acid, after the doctor had put it on my face, she sealed everything with a mask and told me to come back in four hours.
                            Up until now I was certain that the reason for my over-reaction was the "light sessions" themselves. She told me it would take 16 minutes with a small break after 8 minutes.
                            When the whole thing was over she looked at my face and said " I wanna give another 2 minutes". Does anyone know how long it noramally takes?
                            I've been looking into Photodynamic Therapy (Levulan/ALA with IPL) and people generally recommend leaving the mix on 30-60 minutes. Four hours sounds like a very very long time... That might be the cause, though you never know. I think the 16 minutes of IPL is normal, though. What symptoms were you getting this for?

                            Comment


                            • #15
                              Rosacea - general redness and Seborrheic Dermatitis

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