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Excimer Laser Treatment
Replies to This Discussion
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Permalink Reply by DragonandFox on
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I was told by my own Dr. and a Dermatology Intern with my Dr's practice at the Columbia University Department of Dermatology that EXCIMER Laser treatment has been VERY successful for people with FFA! My insurance company denied covering it but I have contacted my State Health Dept advocay group and a nurse is on my case to help me get this treatment.
Anyone know anything about it, have tried it? etc?
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Permalink Reply by April on
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Dragon & Fox,
I had Excimer laser treatment for FFA. When I was having the treatments twice a week, after about 3 months I started to get a little bit of regrowth in the more recently scarred areas. I do think it works, but I wish I could say that I knew for sure if it is a long term cure. I did the treatments off and on for a little over a year. I stopped the treatments because my doctor didn't feel I was having any hair loss. I followed up with my doctor after about 6 months and he felt my hairline was stable. He did not want to put me back on the treatments. However, I do feel that my hairline has been slowly, very slowly thinning over the past 7 years. It is not noticeable to pretty much anyone but me, even my doctor. But, it is happening. I think the Extrac probably helped slow down or stop the loss but I just can't say for sure because my hair loss is so slow. I do see my hairline very slowly changing and thinning. I would try the laser treatment again since there are very few side effects, but, I haven't at this point since it would be hard to get to the appointments with my two small children. Also, my doctor feels my FFA has burned out. It hasn't. He thinks the "thinning" is a separate hair loss issue and would like me to use Rogaine. I will not try it as I am still nursing my little one. We are in disagreement and he is a jerk. He is the only dermatologist in my area that has the laser machine, so...
Well, I don't know if that was helpful or not haha! If you have access to the treatment, go for it. There are no side effects other than some irritation/itching for several days after the treatment. Honestly I wish I was more proactive in trying to go back for the treatments but I don't have the energy to argue with my doctor. Let me know if this works out for you!
April
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That was VERY helpful!! So, I'm pretty sure it's the laser treatment that has given you have such a slow progression of loss. I was been diagnosed with FFA in Jan 2015 and my dr says my progession is "not that bad" but my hairline has significantly reduced (more so recently) and I just noticed "scarring." I can't take anti inflammatory meds for the inflammation (redness+) because of an ulcer. I'm definitely growing an intolerance to the Clobetasol and I spoke with a person at the company who manufactures it and she was concerned I'd been on it for over a year because they say more than 3 months is too much and the side effects are for the endocrine system to shut down.
I'm waiting for insurance company to respond to my advocate from my state (CT) because I;m pretty desperate. TO be honest, I hope I get hair regrowth, but I'm really more concerned with tender, painful scalp and itchy forehead all the time. Also with the hair receded off my temples, only recently do I now have blood shot spots. I'm worried this will effect my job and presentation once the bangs are gone.
April, I'm SO sorry your Doctor is such a jerk. Please try to find a new Dermatologist who knows how devastating this disease is and doesn't just consider it an "appearance" problem. I am lucky both my dermatologists understand the main issue is the scalp pain and tenderness and the scarring. :(
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I've been lasering weekly (with a few interruptions) for 1 1/2 years. I started that because my short trial with meds = side effects. I started out at the doc's office doing the Xtrac weekly for 6 months. Medicare covered, if coded correctly. I then bought a Levia laser for home use which is supposed to be the same wavelength as the Xtrac. It was expensive - $4000. I still have hairloss, but more slowly than without the laser?? I did have perifollicular redness, but do not have it when I laser regularly, so I suspect it does make a difference in inflammation.
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Hi Wyobalance,
this response it stellar!!! if you could share with me where you are located either here or a PM, I'd appreciate it. I'm going to share this info with my advocate! She needs to have this info you provided.
thanks you so much. I'm desperate. my scalp is always in pain.
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Yes, I know I need to find a new doctor! Wyobalance, can you tell me more about the Levia machine? How/where did you get it? How does it work??
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yes, I'd like to know the details as well on the Levia Machine.
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April, that's wonderful if you've had FFA for 7 years and it's barely noticeable. That is very slow hair loss.
For the Levia laser, you will need your doc's rx. I feel it is pretty intense and do apply sunscreen on my face, ears, and neck. And you want to avoid shining it in your eyes. (they supply special glasses). There is a bit of a learning curve, but after a few times you will feel comfortable. I'm not sure laser would be good for someone that is dealing with a very inflamed scalp. Here is their website: http://www.daavlin.com/patients/phototherapy-products/units-for-hom...
I'm certain the laser hasn't stopped my hairloss. Slowed it down, maybe. Never know if that's wishful thinking which is one of the things that makes FFA so frustrating.
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My Dr. from here: http://dermatology.columbia.edu/clinical/hair_nails.html has said Columbia University is having a lot of success with reducing the inflammation by using Excimer Laser therapy.
I don't know if this Levia Laser is the same or similar but, the idea is if you have inflammation, Excimer is working for most patients. For people like myself who have an ulcer and can't take oral anti inflammatory meds and also can't be taking Clobetasol on a long term basis as I have been, due to the side effects being a shut down of the endocrine system, this laser therapy is my only hope!
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This might be a duplicate entry. I have been using the Davelin Light brush for 3 years now after I did my own medical research. My doctor wrote the script after reading the research articles I gave her but has no idea how long I should use it. All of the red follicles I had initially lost the redness but retained the hyperkeratosis. This has been going on three years and all of the initial affected follicles are still falling out ever so slowly. At this rate I think it will be another 5 years before they all fall out. I have not had new follicles become inflamed. Has your doctor given you any advice as to when you can stop treatments? I am worried about skin cancer after prolonged use. No doctor, even a dermatologist, can answer this question for me. I am also uncertain the UVA level I should be using. Any information would be appreciated. I am basically treating myself. I have also been taking Dutasteride 0.5mg all this time but I want to cut back to 3 times per week.
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This might be a duplicate entry. I have been using the Davelin Light brush for 3 years now after I did my own medical research. My doctor wrote the script after reading the research articles I gave her but has no idea how long I should use it. All of the red follicles I had initially lost the redness but retained the hyperkeratosis. This has been going on three years and all of the initial affected follicles are still falling out ever so slowly. At this rate I think it will be another 5 years before they all fall out. I have not had new follicles become inflamed. Has your doctor given you any advice as to when you can stop treatments? I am worried about skin cancer after prolonged use. No doctor, even a dermatologist, can answer this question for me. I am also uncertain the UVA level I should be using. Any information would be appreciated. I am basically treating myself. I have also been taking Dutasteride 0.5mg all this time but I want to cut back to 3 times per week.
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Hello Nancy and Dragon&Fox - Well aren't we out there, using something (blue light laser) that nobody knows anything about. I looked at my notes and started doing laser 5/2015. Initially I was doing the Xtrac at the doc's office and after 6 months bought my home Levia laser device. Since starting laser, I have been doing no meds (I did try topical Minoxidil for a year and saw no results so stopped using it)
I do have a concern about cancer. My doc said he wasn't concerned about cancer long term as I was starting use at an older age (at the time 66 yo). He would be concerned for a 10 year old. I haven't been to the doc since starting home lasering. I do need to go get a scalp/area check. I can feel a very small bump in the back of my neck that I cannot see. I am very careful applying sunscreen in all non-treated areas.
It looks like this is a long-term thing. About 6 months ago I stopped lasering for about 3 months (I've quit keeping obsessive notes about this annoying disease/condition). For 2 months all felt fine. Then the last of the 3 months I started getting mild itching and my scalp felt sick (Those of us with Cical will understand what I mean). I have never had the awful pain that some experience.
During the approx 1 1/2 years, I gradually set the device at it's highest setting, which is concerning for me. So the last 2 months I have been using the Levia Laser weekly on the lowest and next lowest setting and using a handheld OTC Hairmax 2-3 times in between. All in all it works fine, though I am getting some intermittent mild itching.
Hair loss continues? Yes, and it is thinning now on top of my head. When I first started the Xtrac at the doc's office I re-grew about 8 hairs on each sideburn, which appear to be gone now. I don't look at the back of my head, but did so last night, and see some loss at the lower left hairline. I rarely inspect my forehead/sides as I tape on mini hair pieces in the front that last a couple of months. But with the thinning on top, it looks like I need to get ready for the next step. The huge problem with Cical is we can't settle into the status quo.
Thank you for sharing your experience with laser, as it seems there are few of us out there trying it.
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