Well my friend started his excimer laser treatments three weeks ago. Two visits a week; first three went well but by the fourth treatment he was burned on his face. Fifth okay then the sixth burnt again, the tech was increasing the intensity by 20% each time. Even after the burn they turned it up not down based on what their consultant said. This consultant is the salesperson! I couldn't believe it. Now he was aware there was some chance of this but it seems to me how to use these machines seems to be an issue. How many "dermo" offices REALLY know what they are doing? My god this is a big risk. Part of the treatment is on his scrotum too. So far okay down there because they are being more cautious. Forget the vitiligo; I'm worried about a severe burn on his face not to mention increasing the chances for skin cancer. Is this treatment really understood by dermatologists? Why does it get passed off to assistants who pass it off to techs? Seems to me leaving laser marks on the face isn't helping but only "hurting" the patient in many ways.
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Update...My friend provided pics of the burning on his face to the PA along with information on trauma induced spreading as well as increasing the intensity. She basically eluded the questions, didn't address the information, and put it back on him by asking him what he wanted to do and how he thought it should be done. Luckily he is very smart and does his Vit homework but he also treats the "experts" with respect. He made some decisions on what they should be doing but am I the only one that thinks he needs to look elsewhere for a qualified derm? Run don't walk!! Laser or no laser, these people kept quoting the "consultant", the person that sold them the Excimer Laser as being the person knowledgeable regrading how treat patients. It seems they are unable to look at patients as individuals, treatment is cookie-cutter at best.
I would certainly be worried about the burns. My vitiligo seemed to start after I had liquid nitrogen used on the back of my hands to burn off some spots. The vitiligo started wherever I had the liquid nitrogen applied. Then it started appearing all over my body. I have heard many times since that a trauma to the skin can set off vitiligo. That would certainly defeat the purpose of going through the time and trouble of having the excimer laser treatment!
Linda,
Thank you so much for the response. I'm so sorry you had such a terrible experience. Have they done anything to help stop the spread? What type of treatment are you currently using?
This is exactly the kind of information he has found in his research but it doesn't seem the dermatologists office knows it. Twice burnt with laser markings is a huge trauma. He really wanted these treatments and so believes they will help; I truly hope this won't be a set-back. I am disappointed that professionals would try to give a treatment to a condition they really don't understand. At least it is my impression they have no clue.
I was diagnosed about 10 years ago. My family doctor said I had it and that there was no treatment. Being the kind of person I am, I went to the dermatologist (the one that did the liquid nitrogen treatment) and he also said it was vitiligo and that there is no cure except uvb which was expensive, time-consuming and not available close to where I worked or lived. He also denied that it was because of trauma to my skin. So, over the years I have tried to find on my own, ways of curing it, getting rid of it etc. Currently, I am using a sunlamp with a piperine cream that I made and taking folic acid, vitamin c and b12 everyday. This has only been for 2 months and I have not noticed a change. As a matter of fact, it seems to be getting worse as I am noticing more spots on my feet.
I have read that the excimer laser has worked for some people. But I have also read that so do the vitamins I am taking. Who knows? I hope your friend is not being burned literally and figuratively by this dermatologist. Doctors must know how desperate we all are to be rid of this disease. It's already apparent that unscrupulous people try to take advantage of that by promising a cure which of course will cost big bucks. I have also seen someone who claims to have vitiligo offer false hope on this website, for what reason I can't fathom as it is very cruel. There are some people who come here who have suffered greatly psychologically. To claim that something had worked when it didn't defies logic so I really don't understand the logic or motive behind it. However, I believe in karma and unless that person comes clean about the claim they made and that it is a load of crap, I believe that person is going to have to pay back the universe in some way.
Anyway, I hope your friend is going to be ok and that the treatment works. I would still suggest a vitamin regimen as well as the laser. It can't hurt. As well, I think that we all should be proactive about any treatment we receive from any medical professional. If your friend feels like he is being ripped off or harmed in any way, he should run, not walk, to the nearest exit.
The more I learn the more I think it really is a crap shoot figuring out what works best for each individual. You have had quite an experience. I would like to believe doctors have good intentions for helping but unfortunately not all of them know where to draw the line. It is also unfortunate they don't see the psychological affects of vitiligo. Money seems to speak louder than admitting they really don't know what to do.
Thank goodness my friend isn't one to sit by passively and let this continue. He is hot on the heals of the P.A. for input. Thanks again for sharing and btw I'm with you on the karma!
Replies
I would certainly be worried about the burns. My vitiligo seemed to start after I had liquid nitrogen used on the back of my hands to burn off some spots. The vitiligo started wherever I had the liquid nitrogen applied. Then it started appearing all over my body. I have heard many times since that a trauma to the skin can set off vitiligo. That would certainly defeat the purpose of going through the time and trouble of having the excimer laser treatment!
Thank you so much for the response. I'm so sorry you had such a terrible experience. Have they done anything to help stop the spread? What type of treatment are you currently using?
This is exactly the kind of information he has found in his research but it doesn't seem the dermatologists office knows it. Twice burnt with laser markings is a huge trauma. He really wanted these treatments and so believes they will help; I truly hope this won't be a set-back. I am disappointed that professionals would try to give a treatment to a condition they really don't understand. At least it is my impression they have no clue.
Deb
I was diagnosed about 10 years ago. My family doctor said I had it and that there was no treatment. Being the kind of person I am, I went to the dermatologist (the one that did the liquid nitrogen treatment) and he also said it was vitiligo and that there is no cure except uvb which was expensive, time-consuming and not available close to where I worked or lived. He also denied that it was because of trauma to my skin. So, over the years I have tried to find on my own, ways of curing it, getting rid of it etc. Currently, I am using a sunlamp with a piperine cream that I made and taking folic acid, vitamin c and b12 everyday. This has only been for 2 months and I have not noticed a change. As a matter of fact, it seems to be getting worse as I am noticing more spots on my feet.
I have read that the excimer laser has worked for some people. But I have also read that so do the vitamins I am taking. Who knows? I hope your friend is not being burned literally and figuratively by this dermatologist. Doctors must know how desperate we all are to be rid of this disease. It's already apparent that unscrupulous people try to take advantage of that by promising a cure which of course will cost big bucks. I have also seen someone who claims to have vitiligo offer false hope on this website, for what reason I can't fathom as it is very cruel. There are some people who come here who have suffered greatly psychologically. To claim that something had worked when it didn't defies logic so I really don't understand the logic or motive behind it. However, I believe in karma and unless that person comes clean about the claim they made and that it is a load of crap, I believe that person is going to have to pay back the universe in some way.
Anyway, I hope your friend is going to be ok and that the treatment works. I would still suggest a vitamin regimen as well as the laser. It can't hurt. As well, I think that we all should be proactive about any treatment we receive from any medical professional. If your friend feels like he is being ripped off or harmed in any way, he should run, not walk, to the nearest exit.
The more I learn the more I think it really is a crap shoot figuring out what works best for each individual. You have had quite an experience. I would like to believe doctors have good intentions for helping but unfortunately not all of them know where to draw the line. It is also unfortunate they don't see the psychological affects of vitiligo. Money seems to speak louder than admitting they really don't know what to do.
Thank goodness my friend isn't one to sit by passively and let this continue. He is hot on the heals of the P.A. for input. Thanks again for sharing and btw I'm with you on the karma!