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Excimer Laser Treatment
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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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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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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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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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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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My recommendation before purchasing a Levia Laser - ask your doc to do laser treatments (Eximer) on one half of your head for a few weeks (they start out twice a week, then decrease to weekly). If you see an improvement on the treated side, such as less redness around the follicles, then consider purchasing a Levia, as it is very expensive to purchase.
Again, I question lasering someone that has a lot of scalp inflammation, as it causes a mild sunburn.
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11/14/16 Not sure if this site is working correctly (or it could be me). I received an email that I got a response from Nancy79, but the page came up non-working. I tried several times. Hmm
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It was me and I do not know how to work the site. I was trying to email just to you to compare notes on the Levia Light Brush. I started at 75 jewels and increase 10 percent each treatment up to 400 jewels. Were these the levels recommended to you? My machine has been in the shop 3-4 times so I have only gotten up to 400 jewels once. The casing of my handle has broken twice. This last time I had them send me the parts and I took it apart and put it back together myself. It does still work but I do not know if I would recommend it. Has yours had breakdowns?
I looked at my notes and I have been using it weekly for 3 years. Based on your input I guess I will not cut back. Do you have a doctor guiding you in the doses and how long to use it? Your information has been very helpful. Dutasteride 0.5mg stopped my shedding with no side effects I am aware of.
Let me know if there is any info from me that might be helpful.
Nancy
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I had to wait until I did a laser treatment to see how many joules I am using - 167 and I'll probably stay there. The first 1 1/2 years I increased it as was done in my dermatologist's office - no sunburn = a 15% increase. I think I ended up doing over 600 joules, but don't remember exactly.
Wow, you certainly have had problems with your Levia laser! I don't know if I have a case handle - if I have a case, it is out in the shed as I have kept my laser in the same spot on the same table the whole time. Other than sending in the fob thing for a yearly re-calibration I have had absolutely no problems so far. Did you, by chance, get a lemon, or did I luck out with one good one.
Since everything is trial and error with this disease, I don't think the docs know either what is the best laser setting. My doc treated my Cical the same as he treats psoriasis.
Since my hair is thinning throughout, I wonder if my setting was too high. If the handheld over the counter laser helps, do we need to do the Levia. Who knows. Here is info on laser hair removal and laser hair growth. Heavens we do not want to remove hair! http://www.apirascience.com/blog/laser-hair-growth-versus-laser-hai...
How long have you been on Dutasteride. I know of a couple of women trying it but have not been on long enough to know if it is helping. How do you know it was the Dutasteride and not the laser that stopped the shedding.
Ah, life would be much more simple if this could be cured.
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I think I got a lemon. By casing, I mean the plastic handle broke where the cord connects to it and the wires were exposed. I use mine standing up because I have such a small house which we have determined puts too much pressure on the handle casing. The other breakdowns were bad luck I guess.
I researched the treatments for this at my local university medical center library. Three years ago the only thing that had the highest probability of helping this condition with little to no side effects that I could find was Dutasteride (50-60%) and the uva light brush. I called the researcher at U of Mass to get the company of the light brush they used (Levia).
I had been noticing a lot more hair in the drain (along with my hairdresser) and the fact that it was taking a lot less time to dry my hair. When I noticed a loss in the front I took action with my research. I got on the Dutasteride immediately and within a week my hair in the drain was back to normal and my hairdresser stopped mentioning it. The result was totally due to the drug since I did not have the light brush yet. I must have had two things going on, shedding and FFA. I had a little regrowth but it turned out to always be fine and very short. The regrowth had no significance. Others have reported this as well.
It has sexual side effects for men but little to no effect on women. So little I do not remember. I have had no side effects. I read that taking it every other day can be just as effective so after 3 years I am cutting back to taking it 3 times per week since I am getting closer to the burnout stage. It comes generic now and I buy it at Costco without running it thru insurance. It is much cheaper paying cash than my insurance copay. My research showed that dutasteride was much more effective that finesteride which is the same class of drug.
Like I said I think the dutasteride stopped the FFA attack in its tracks but all of the original damaged follicles that were inflamed are slowly falling out. After 3 years about half are gone. They have hyperkeratosis and I think will eventually go. The Levia brush stopped the redness and itching of the follicles.
Interesting to note that all the other treatments that I see being used in this blog show little to no effect with a bunch of bad side effects according to the literature. I started down that road briefly with a doc with clobetasol and very quickly did not do any recommended treatments. The Kenelog shots may only have a little effect in the early red follicle stage and can leave you with permanent dents in the head and thin skin exposing blue veins. One doc that wanted to shoot me up stated "Your're going to be bald anyway so whats the problem? when I refused the shots.
Getting back to the Levia brush the research study I read started at 75 joules and increased by 10% with no sunburn to 400 joules. The participants significant reduced redness and itching. One person experienced hair regrowth but I think that person had something else rather than FFA. Other combs that do not have the tines to get right on the scalp were reported to be not effective. Since I have this machine I have not researched other uva brushes. Maybe at this time they have tines that work down thru the hair to have contact with the scalp. I know 3 years ago there was some brush available for around $300 but it did not have the tines like the Levia.
What is Cical? I do not think you caused the hair thinning with the brush. Levia told me they had people using it at 1000 joules without problems. I don't want to go beyond the 400 joules used in the study because it seemed to do the trick.
When this attack is completed I will have lost an inch across the top of my forehead that stretches about 5 inches long. I guess I will have to live with that but I am dreading the next attack. I know now I had a very small attack 15 years ago before menopause in which I lost my widows peak. It would be great if they could find out what gets FFA going so we could avoid future attacks.
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