Patient Comments: Photodynamic Therapy - Candidate

Question:

For what condition did you have photodynamic therapy? Submit Your Comment

Comment from: Lee, 65-74 Female (Patient) Published: November 08

I just had the photodynamic therapy, full face, for actinic keratosis. This is the third time, and I forgot how awful it was. It did hurt a lot; the entire time. I had a hose with some air blowing and that was helpful. The nurse, kindly, distracted me with conversation. Afterwards, the first day was stinging and uncomfortable and I hated the vampire life, being cooped up indoors. Serious redness came next. And now I am in the zombie stage; serious peeling and red blotchiness. It looks horrible, so you don't want to see people or go out in public. After the first day the pain was minimal, just tight skin mainly. My advice is to get the full story from the medical folks as to what to expect. If you have ever done Efudex, you won't think this is nearly as bad. Though it is no fun either! Good Luck if you are reading this!

Comment from: Doctor Dee, 55-64 Female (Patient) Published: October 04

I went to my first session of photodynamic treatment on my face for precancerous lesions and it was so excruciatingly painful, I only lasted 30 seconds. I'm a redhead and have felt sunburns in my lifetime. Nothing could have prepared me for this pain. Not sure what the doctor will do now. But she told me I was the only patient she ever had who experienced this.

Comment from: padric, 75 or over Male (Patient) Published: May 17

I have had photodynamic therapy three times for actinic keratosis (AK). It can be painful during the blue light radiation. A 6 to 7 on a 10 point pain scale. Schedule it for a Thursday or Friday so that you will have the weekend to mostly recuperate. The procedure is covered by Medicare and so is way better than paying the outrageous prices they now charge for fluorouracil cream. Your recovery is faster and the technique is such that it is more effective in locating and destroying AK cells that have not yet disclosed themselves as visible red blotches.

Comment from: Donna B, 55-64 Female (Patient) Published: May 09

I just had my second blue light treatment. The results for the second were the same as for the first. The photodynamic therapy treatment was better this time as they didn't have a fan the first time. This time I had a small handheld fan that I directed on to my face which made the intensity much more tolerable. I had the same hot feeling, redness and discomfort afterwards. I am a redhead and remember the childhood sunburns that got me here so the sensation of a severe sunburn is very familiar. It is the price you pay for the early burns. I lost a good friend to melanoma so I am all for taking away risk to my life caused by skin cancer. A few days or even weeks of discomfort for years of less risk works. Ibuprofen, ice packs, moisturizer (Aquaphor ointment) and patience. Stay out of the sun completely and that means away from windows. Use a gentle cleanser like Vanicream to clean the face 2 to 3 times a day in the first 24 hours, and then moisturize. Might be uncomfortable but being on the right side of the grass is the goal.

Comment from: Will, 65-74 Male (Patient) Published: May 03

I went in for photodynamic therapy this morning. I had no idea what to expect except that I would need to avoid the sun and wear a hat for a couple of days. The nurse administering the procedure advised me that there would be a burning sensation (understatement). The procedure was being done on my scalp which has a lot of sun damage. When the blue light started I immediately felt as though gasoline was on my head out of control. The pain was so intense that I had to discontinue the procedure after only a couple of minutes. My doctor is planning to do a different procedure for me. I'll never attempt this again.

Comment from: chris, 55-64 Female (Patient) Published: August 14

I am on my 5th day of recovery from blue light (photodynamic) therapy. I didn't know what to expect. It wasn't that bad as I have had horrible sun burns in my life. I am concerned about areas that were not affected by the treatment. There are some badly damaged areas (dark spots). These spots are primarily on the side of my face. I am wondering if they will eventually go away as it has only been 4 days. Other than that, I am doing fine. I have been in a lot of discomfort but have had sunburns worse than this.

Comment from: Elarsen797, 45-54 Male (Patient) Published: June 23

It is now two days after photodynamic therapy treatment. I will say the stories here scared the life out of me! However, the most painful part was the scrubbing with acetone they did to me before the treatment. While under the blue lights it felt like prickly heat/pins and needles, nothing remotely painful. Next day I looked pretty sunburnt and had some face swelling. Today I feel fine and only my forehead has a little pain still, but that is where I had the most problems to begin with. There are 4 or 5 scabby looking spots there. So I hope it was intense enough as for me this was a very mild and tolerable experience. We will see if it gets worse in 30 days when I go in for round 2!

Comment from: Liamn, 65-74 Male (Patient) Published: February 17

It is four days after second facial treatment and four weeks after the first treatment. I was not prepared for my current condition, much more redness and leather-like condition of the skin. I am so concerned I looked into these photodynamic therapy effects and saw this blog. I hope my face doesn't start having further reactions that include some of the severe ones mentioned by others here. I'm surprised since the first treatment went almost without a hitch.

Psoriasis Symptoms, Causes and Treatment
Comment from: Yatbutterfly, 55-64 Female (Patient) Published: June 21

I had the blue light treatment (photodynamic therapy) on my face for pre-cancerous treatment. The dermatologist made light of the treatment and didn't prepare me for the ill affects I have had. Now that my skin has fully healed, my skin is terribly drawn and damaged. I am so sad.

Comment from: Ellen, 65-74 Female (Patient) Published: February 16

I had photodynamic therapy (PDT) on the front of my calves 10 days ago for actinic keratosis (AK). It was the worst pain ever. The nurse cleaned my calves with acetone, applied the Kerastick to them, wrapped them in Saran wrap and ACE bandages and sent me on my way. I came back 3 hours later for the light treatment. I don't know how I made it through the entire treatment. The nurse was spraying water on my legs with one hand and aiming a small electric fan on my legs with her other hand. The pain was excruciating. I thought I would get some relief after the 16 minute 40 second treatment. Boy, was I wrong! I had no idea that I wouldn't be up and functioning in just a few days. Because I had significant sun damage, I had more pain. The AK was constantly itching, and I was at the dermatologist frequently having them frozen. When she suggested Levulan Kerastick with blue light therapy I was ready, or so I thought. However, I have spent most of the last 10 days in my recliner with my legs propped up on pillows. My calves are so swollen. I moisturize three time a day as directed, but when I have to stand up, the weight on my legs causes cracking, bleeding, and burning. I had this treatment to stop the itching AK. Now I'm starting to peel slightly and it itches a lot. My calves are still bright red with a lot of brown crusts. I am so looking forward to the crusts peeling off. I weighed 116 pounds 10 days ago. Because of my lack of movement, I weigh 122 today. It's hard to be active in a recliner. I'm supposed to have my face treated in April. I've had two cancer surgeries on my face, and have several small areas of AK on my nose. I dread going through this again, but would rather suffer through to keep from having more surgeries on my face. Next time I will definitely ask for pain medications. I am supposed to have the back of my calves done too, but I'm not sure I'm up to that. If I had known how painful this procedure was, I would have asked for some serious pain medication or would have taken at least four ibuprofen before the light treatment.

Comment from: fedup, 45-54 Female (Patient) Published: November 19

After having this photodynamic therapy 3 times for Bowen's disease, I can't stand the pain any more. Even after nerve block etc., it makes no difference. I think it is bad that they play it down and don't tell patients how it really is, especially on fingers and sensitive parts.

Comment from: Windi, 55-64 Female (Patient) Published: November 11

Day 10 after photodynamic therapy (PDT) to my face and although I coped with the treatment, the healing is extremely traumatic. I was not prepared for the burning, redness, sloughing, pustules formation, itching, pin pricking pain, leathery feeling to my skin and looking so bad. I've cried a few times and I am struggling to think it will ever look like me again. No one prepared me for this. I was told afterwards that I had had a severe reaction which will mean a good result in the end. I was advised to have it by my skin specialist after two basal cell carcinomas to my nose in a 6 month period. I have been confined to home, staying indoors, ordering groceries online. It has been suggested I may need a second treatment. It won't be happening.

Comment from: Ecm, 55-64 Female (Patient) Published: July 08

I had photodynamic therapy (PDT) done 12 days ago for 3 actinic keratosis spots on my face, one on my nose and 1 on each cheek. It was the most painful recovery that I have ever experienced. My face was very swollen after and turned tomato red. Between day 6 and 11 my face was constantly bleeding and painful and beet red. Bleeding slowed down but the redness has not gone down as of today which is day 12. I would never have this procedure done again, most painful experience ever.

Comment from: nor so red one, 65-74 Male (Patient) Published: January 07

I had photodynamic therapy (PDT) three days ago for scalp actinic keratosis, and had no pain under the lights or afterwards and subsequently, mild to moderate redness. I may need to do another treatment but wanted to say that not everyone experiences pain or extreme redness. I will report back after ten days and give an account of how well or not the treatment worked.

Comment from: IcePick, 55-64 Male (Patient) Published: November 25

I had first photodynamic therapy (PDT - Blue light) on whole face to treat actinic keratosis (AK) spots. I have a generally low pain tolerance, but didn't find treatment bad at all. Some intense tingling, pin prick sensation, but very tolerable as you know you'll be done with it in 16 minutes. My doctor places a large fan behind you to help cool things down, but I almost wish they wouldn't. I think I'll ask them not to next time. The office is cool anyway and with the fan I was shivering while the face was getting baked. That was worse to me than the treatment pain. It turned bright red the next day, but I am back to pretty normal color on day two. I will have to wait and see if I get any peeling.

Psoriasis Symptoms, Causes and Treatment
Comment from: jimh, 55-64 Male (Patient) Published: October 15

I had the red light photodynamic treatment 2 days ago for keratosis. The treatment was very painful, but short at 4.5 minutes. I went to work the next day, and the lights in my building began to activate the chemical again causing a lot of burning, so I decided I needed to leave work and when I went outside, and the pain was intense even with a hat. The drive home was sheer torture. When they tell you to stay out of the sun for 48 hours that means stay in a dark setting or risk going through much worse pain than the original treatment for much longer.

Comment from: Marc, 35-44 Male (Patient) Published: September 03

I am on day 5 of my 7th photodynamic therapy (PDT) treatment. I had my legs done in 5 treatments, then face, and now arm. I can say it was all worth it in the end. I have very light/freckled skin and plenty of solar keratosis lesions. This treatment cures all the bad ones. Make sure you take Brufen tablets an hour before. The pain during blue light treatment is terrible, teeth gritting stuff. Pain peak is at 7 minutes. Cold air application is essential. Afterwards ice packs for about 3 hours. Then more pain pills for the night. Next day is okay. Days 3 to 7 are awful. I had waves of stabbing pain like you have just put your hand on a stove. Then peeling starts and scabs start to flake off. Day 10 there is sudden relief. Day 14 it's all over.

Comment from: 45-54 Female (Patient) Published: July 17

I am on day 4 of this photodynamic therapy treatment, I have lots of sun damage and 2 spots on my face the dermatologist called cancer cells. I will have to deal with the cancer cells another way, this treatment is horrifying, along with the pain, itching, burning I haven't been able to go to work or anywhere for that matter, I look like Freddie from the Halloween movies! Doctor said I would turn red, she is going to hear an earful when I see her again! Please inform people all the possible side effects!

Comment from: NJ, 55-64 Female (Patient) Published: March 26

I"ve undergone 3 photodynamic therapy (PDT) treatments for actinic keratosis/sun damage on my face. All were very painful and this last time I was nauseous afterwards. My concern is the dermatologists don"t explain or prepare patients well enough before the procedure. My bigger concern is that no pain medications are offered to counteract sitting there for that long with intense pain. You would think in this day and age all dermatologists would prescribe a "before" pill or some numbing agent along with the acid. I don"t know if I can endure any more - I understand the reason but the pain level is horrible. I had a 2 hour drive home and the first time was totally unprepared and suffered terribly. The next two times I was prepared with ibuprofen, cold packs, etc. to endure the drive home.

Comment from: Sammy, 45-54 Female (Patient) Published: January 21

I had the PDT (photodynamic therapy) treatment four days ago for rosacea. It is a little claustrophobic sitting while the light box is on. I felt small 'tingling' sensations on my face during the procedure. Afterwards, I applied jojoba oil on my face several times a day and took ibuprofen as well as stayed inside. I did have some swelling the first two mornings and some redness. Day five now, I look normal with the exception of my skin looking dry. I believe this is due to the fact that it has not peeled yet (I was very diligent about the jojoba oil!). Overall, on a scale of 10 the pain was only about a 3 for me. I do look forward to seeing what the results will be to my rosacea and damaged skin cells.

Comment from: Red One, 45-54 Female (Patient) Published: February 25

I had photodynamic therapy treatment done yesterday and was apprehensive going in after reading the testimonials on this site. It wasn't that bad! I took three ibuprofen prior to the actually light treatment. As the nurse prepared me, the first three minutes are the worse and it was about a 3 on a scale of 10. Little pin pricks, tingling ... really no big deal. I was expecting the light to be hot, like in a tanning bed but it wasn't at all. I didn't even use a fan. Once I was home. I applied ice packs for a few minutes every hour for the first few hours. By evening, my face was bright red ... looked like a terrible sunburn, but it did not hurt at all. Today, 24 hours after the treatment, my face is still very red, but really not painful or tight like sunburn would be. I have kept my entire face covered with a thin layer of Aquaphor, as my doctor directed me to do. I slept propped up last night and continue to take Advil to minimize any swelling. My sister had a terrible experience with this treatment last year, so I was prepared for the worse. So far, so good. I'm staying indoors for the 48 hours after treatment as advised by my doctor. Anxious to see the results after the skin peels. I have rosacea and have had multiple basil cell skin cancers in the past.

Comment from: steve, 65-74 Male (Patient) Published: November 13

I had a full facial photodynamic therapy treatment yesterday. I will have to say the doctor did not fully prepare me for what I would experience. Said it would feel like bee stings all over your face. I was actually feeling like someone was tearing the skin off your face. About five minutes under the light I thought about crying out for help. Eight minutes in the nurse came back in to check and by then face was throbbing and she called the doctor in. He said he had the treatment and staying with full 16 minutes would be a matter of will power and longer I stayed the better the results. Stayed the full 16 minutes. Today, face feels like severe sunburn. Hope the gain will be worth the pain. Dread going back if second treatment is necessary!

Psoriasis Symptoms, Causes and Treatment
Comment from: Alevy, 55-64 Female (Patient) Published: January 19

I have had the blue light treatment 5 times since 2009. Yes, photodynamic therapy is very painful, especially the first time. Each treatment the pain became less painful and yes, it does improve the quality of our face over time. If I had a choice between surgery on the face or blue light, I opt for blue light. The doctors don't warn us, probably we would opt out. Now, 5 treatments out, the doctor and nurse tell me how bad my face really was before treatment. We get used to the discoloration and sun damage on our skin. My best suggestion is, Vaseline OR Aquaphor constantly. Lather it on, it will absorb. It does help healing and minimizes peeling. The results are worth it.

Comment from: Blue light repeater, 55-64 Female (Patient) Published: April 15

I have had the blue light treatment a few times. This last time, four days ago, was the mildest response – which was expected since I have done it before. However, I did almost faint this time and had to stop 15 seconds before the time was up. This near-fainting response happened the first time as well, so I suggest you make sure the nurse stays nearby. After the first time I did this treatment, I decided to try a small amount of Xanax because I find the claustrophobic experience and the pain to be almost intolerable. “Almost” is the operative word, because if you can hang in there for the treatment, the results are great: for both the removal of actinic keratosis (AKs) and the look of your skin. The most painful post-procedure response I had was when the blue light was paired with laser to increase the effect. I could barely open my eyes the next morning due to the swelling. Ice packs, a dark room, and a loving family are helpful too. Emollient lotion and a small amount of cortisone cream also help the swelling, itching and tight feeling of the skin after it has been burned. Definitely don't plan on doing much for the 48 hours following the face procedure.

Comment from: Capid, 55-64 Female (Patient) Published: March 21

I can usually tolerate pain pretty well, however, I was surprised how painful the PDT treatment turned out to be. It's like getting a bad sun or acid burn and not being able to move away from it if you want to finish the treatment. I had tears in my eyes! Though they said this was not a typical reaction, I was unprepared. Afterwards it was about like a bad sunburn feeling and healed about as easily. My advice - if you have to get this done, take a pain med before the light hits!

Comment from: SL, 45-54 Female (Patient) Published: January 09

I have had PDT treatment 2 times in the last 6 months for AK's. It is one of the most painful things I have ever experienced. I am not sure where this website is getting their information but I read somewhere else the light treatment is considered to have a pain level of 8 and 3% of all individuals cannot continue the 16 min 40 sec treatment. I pushed through and did it but also was taking Dr. prescribed pain meds and continued so for 2 days after. It is well worth the pain, as my skin looks great and it is very smooth. Just prepare for the pain.

Comment from: Jan, 65-74 Female (Patient) Published: April 12

Suggestions for getting yourself through photodynamic therapy, from a three-time patient are the following. Pre-medicate with Tylenol or Advil. Bring your music, makes it go much faster. Stay out of sun or any light for 48 hours. Moisturize, and finally find somebody to laugh with. You will be safe and beautiful on the other end. Best of luck.

Comment from: Garry, 45-54 Male (Patient) Published: May 05

I had PDT treatment last week for Actinic Karatoses on both arms after a sixteen hour incubation period. The prescribed time under the lights was sixteen minutes and forty seconds. I made it to six minutes when it was totally unbearable and had to stop. The next two days were terrible, the area around my elbows and forearms swelled and the burning was a lot more than the worst sunburn you could imagine. On the fourth day, the burning subsided but the swelling is still there and now blistering and weeping are taking place. This has been a horrible experience and had I known it would be this bad I never would have done it. My arms feel and look like they were dipped into a deep fat fryer. PDT, never again for me.

Comment from: Bret Z, 45-54 Male (Patient) Published: May 05

I have extensive pre-cancer damage: as well as, have had actual skin cancers removed and I totally believe in the PDT. It is somewhat intense but it only lasts 16 minutes with the first five to six minutes being difficult. If you can't find a relaxed state try to control your breathing which slows down internal excitement. I am currently going through three treatments spread three to four weeks apart and am having my arms, chest, face and back treated. Try that with other options. If they would hire me I would spread the word to all dermatologists and skin specialists. I use the specialty dermatology department from the University of Utah. I have spent my entire life in the sun and years back sun screen was baby oil- so dumb.

Comment from: RBD, 65-74 Male (Patient) Published: May 05

Had the photodynamic therapy 48 hours ago for facial actinic keratosis. The light (red) therapy itself was extremely painful, picture putting your face in a heated oven for 20 minutes. The only thing that made it bearable was the fact I was provided with a hose which gave off cool air. I was able to constantly rotate cool air on the treated areas. The nurse also stayed and engaged in small talk, obviously trying to get my mind off the intense pain. I am very red, as in a bad sunburn. Very blotchy also, and now 48 hours later finally feeling skin tightness. Hope it was worth it down the line.

Psoriasis Symptoms, Causes and Treatment
Comment from: SP, 35-44 Female (Patient) Published: May 05

I agree that this is a very painful procedure. I spent 15 minutes under the light, and it was probably the worst 15 minutes of my life so far in terms of pain level. If I ever did this again, I would definitely request Valium or something like that prior to the procedure. I experienced extremely red skin on my face, and as of day 5 post treatment, almost all of my skin has peeled off. Very unpleasant experience (but hopefully worth it).

Comment from: burned to a crisp, 55-64 Female (Patient) Published: May 05

If you have a lot of sun damage on your face, lots of AK (actinic keratosis), be prepared for a very painful photodynamic therapy (PDT) experience, with the pain lasting way longer than the doctors typically predict. I had the procedure nearly 4 days ago for actinic keratosis and the swelling and tingling/stinging are still bad. I have a very high tolerance for pain, I"m an athlete. Yet I had to beg my doctor for pain medications to deal with the anxiety and trauma of being in severe pain for this long. My advice is, get pain medications up front and don"t take no for an answer! Also, don"t do this procedure unless you feel all other options have been exhausted.

Comment from: 35-44 Female (Patient) Published: May 05

I have just had PDT treatment done and I have NEVER experienced that kind of pain before, it was close to unbearable and I think one should be informed to a more expanded view of just how painful this procedure can be. It has been 5 days and I am peeling severely around the damaged areas with still some sore spots. For me, I would think twice before having to endure that pain again.

Comment from: 75 or over Female (Patient) Published: June 25

I'm getting this treatment for the precancers on my face.

Published: May 02

I had the treatment done for a second time yesterday. It is worth any pain you may experience, and as a bonus, your skin will look better. One thing that will make your recovery more bearable is to lie in a darkened room with your head propped up and keep a fan pointed at your face (on low speed). If you are lucky as I am, your “other half” will take care of you. No pain, no gain on this one.

Comment from: Indysailor, 65-74 Male (Patient) Published: March 13

I recently had the PDT treatment done. The first surprise was the use of acetone to cleanse the skin after that another cream applied and a 1 hour waiting period. Then a second cleansing with acetone. The product was then applied and the lamps turned on. It wasn't long before I was thinking about stopping due to the increasing stinging all around my face. The nurse came over with a book or something and began fanning the air which brought some relief or at least I thought it did. Might have just taken my mind off the pain. This is now day 4 and I look like Mr tomato head,starting to peal but the majority of pain is gone. Some swelling under my eyes. I have applied triple Antibiotic Ointment + pain Relief which has helped a bunch.

Comment from: baby boomer baby oil, 55-64 Female (Patient) Published: February 01

I received PDT for actinic keratoses and brown spots on my skin. I am on day 3 of my recovery. Fortunately the nurse used a pain relieving cream for 15 mintues before the blu-light was applied. The first night at home I could hardly sleep, the stinging and pain were so bad and yes I took an ibuprofen. The second night there was actual throbbing even though I was using two pillows as suggested. It now looks like I am breaking out into a dermatitis or rash on my forehead. Too much lotions? I don't know I will have to call the dermatologis in the morning. I would have to say neither the nurse or the dermatologist mentioned the pain and the constant stinging. I could of been easily given more information on this but I wasn't.

Comment from: All good so far..., 45-54 Male (Patient) Published: November 15

I had the blue light treatment for AK's and apparently one of the lucky ones that didn't have any pain during the 17 minutes I was in the light "booth." The attendant had given me a small fan which was a great distraction (I wish I had thought to listen to music on my phone/Pandora, it would have made the time go by faster. No real pain/just itchy for first 24 hrs, no redness for the first 8 hours and then you start to see the spotting of the AK's (actually relieved to see that as they are apparently kill zones) - definitely beats regular cryo freezing.

Comment from: Gerald, 55-64 Male (Patient) Published: August 23

I had photodynamic therapy treatment with Metvix cream and have to say the light treatment was intense and I am sure there must be someone out there that can bring technology to the party to soothe the head while undergoing this. The specialist used a water spray continuously and without that I am sure I would not have coped. Take a med before doing this if there is scalp treatment. The treatment on the face and nose was quite easy, but the scalp! Day two and I am looking like sunburnt frazzle and still sensitive but coping quite easily without medication. Judging on the results my friends have had I cannot wait to see the result in 10 days! Prevention is better than cure, so live with the pain!

Psoriasis Symptoms, Causes and Treatment
Comment from: RDROSE, 25-34 Female (Patient) Published: June 08

I just had a photodynamic therapy (PDT) treatment two days ago. The day of the treatment I was fine with some redness and heat. Day two was horrible. I had constant pain that would not subside -- it was like I had acid on my skin. I kept an ice pack and small fan blowing on me for close to 24 hours. At almost exactly 48 hours the burning was replaced with tight swollen dry skin all over my face that is itchy, but much more tolerable. My doctor had obviously not had anyone have a reaction like mine. They could not tell me anything that would help the burning, but I made due with painkillers and a cool breeze. I wish my doctor would have told me driving myself home right after might not be a good idea due to the sun exposure. I think that probably had quite a bit to do with my reaction. Zero sun exposure is best. Today is day three and my skin is still red and is really tight especially around my mouth. I am also starting to peel around my eyebrows. I am using Cetaphil DermaControl Oil Control Moisturizer for the dryness.

Comment from: Peter van Kets, 35-44 Male (Patient) Published: May 08

I have just undergone photodynamic therapy (PDT) to my face to treat sun damage. I have a high pain threshold and that treatment was the most painful experience I have ever had. I have rowed unsupported across two oceans, trekked to the South Pole, broken my neck, and spent my life doing crazy things. That pain trumped it all. Next time - if there is. I will ask to be anaesthetized.

Psoriasis Symptoms, Causes and Treatment
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