Patient Comments: Photodynamic Therapy - Experience

Please describe your experience with photodynamic therapy.

Comment from: Sherryohio, 55-64 Female (Patient) Published: April 12

I had photodynamic therapy yesterday and it is the worst pain I have ever had. I had this done 3 years ago and never wanted to have it again, but because of cancer concerns I agreed. Tylenol does nothing for this. This time is even worse than the last. I have three washcloths in the freezer and I rotate them every couple minutes. I'm on hold now for the nurse and thought I would check and see if this is a typical reaction. It seems it is, but certainly the pain is minimized by the staff, when questioned about the recovery. We have snow outside, debating on sticking my face in it.

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Comment from: 45-54 Female (Patient) Published: December 01

I had photodynamic therapy on my entire face in April 2015. I was told I had to have this procedure prior to my dermatologist doing laser to correct scarring on my nose. The tip of my nose was a bit swollen at the time but a week after the procedure my nose jutted out about 1/8 of an inch. I was told it was temporary and would go down. Seven months later the tip of my nose is still very swollen and hard to the touch with a bruise/bump on the side of my nose, my mouth is always dry and my entire face is broken out. I was told this was a coincidence and was referred to an ENT. I have an appointment this month with an ENT.

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Comment from: Bocephus, (Patient) Published: November 24

I had blue light therapy on the back of my hands and forearms 10 days ago. I have been back to the doctor twice, emergency room once and have another doctor's appointment today. The area looks like third degree burns and I can hardly move my hands due to swelling, blisters, scabs and pain! Not sure if this is normal (as the doctor says) but this photodynamic therapy has been a terrible experience. Not sure I would ever put myself in this position again.

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Comment from: ouch, 35-44 Female (Patient) Published: November 05

I believe the intensity of the pain and reaction is proportional to the amount of time the acid gel is left on prior to the light treatment. I had my first photodynamic treatment to both of my arms a little over a month ago. The gel was left on for 90 minutes and the light treatment was the standard 16 minutes and 40 seconds. I felt mild tingling during the treatment but it really wasn't painful. I was slightly red for a few days; not any worse than a very mild sunburn and I never peeled. I had my second treatment yesterday and it was absolutely nothing like the first. The gel was left on for 3 hours prior to treatment. During the light treatment, the pain was bordering unbearable and I consider myself to have a high pain threshold. It felt like my arms were actually on fire, or placed up against a metal radiator, or burning on a hot stovetop; extreme pain. Driving myself home was torture and actually made me cry. I've had ice packs on all night and the burning is still incredible. I can hardly move my arms. After the first treatment, I was certainly not expecting this. I sure hope I get good results after all this.

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Comment from: jasto, 45-54 Female (Patient) Published: August 18

For me, the most difficult part of the photodynamic therapy experience was the 90 minutes of waiting after the gel was applied to my face. However, I brought a book and read at leisure for the first time in years, so I enjoyed that. I was expecting the worst from some pain descriptions here. Therefore, I planned to use deep breathing and guided imagery to calm myself. I guess it worked really well, because I could not say there was anything like pain during the 16 minutes under the lights. The sensation I experienced around my lips reminded me of biting into a fruit that is irritating. My face has gotten very red, 60 hours post procedure. I stayed indoors the first day as instructed, although the car ride home freaked me out because it was very sunny out! I walked outside the next evening, slathered in sunscreen (as usual). I walked again today. Tonight, my skin has gotten so tight it hurts to yawn and smile. Lotions sting, but coconut oil feels great. In the last few hours, peeling has started.

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Comment from: bruce, 55-64 Male (Patient) Published: June 30

I had the photodynamic therapy (PDT) 48 hours ago. Not sure whether it's doing anything. I spent 27 minutes under the light, zero to mild pain, now slightly red but itchy; sure hope I get results.

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