Replies to This Discussion

Permalink Reply by Wyobalance on June 10, 2016 at 2:13pm

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.

Permalink Reply by DragonandFox on June 10, 2016 at 9:09pm

I'm confused by what you're saying Wyobalance.  My Dr says the excimer would be the best treatment to reduce the inflammation. 

Permalink Reply by Wyobalance on November 14, 2016 at 2:59pm

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

Permalink Reply by Nancy79 on November 14, 2016 at 4:12pm

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

Permalink Reply by Wyobalance on November 18, 2016 at 11:40am

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.  

Permalink Reply by Nancy79 on November 19, 2016 at 12:43pm

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.  

Permalink Reply by Wyobalance on November 19, 2016 at 7:13pm

Nancy, Your info is so interesting.  I never thought of having attacks.  I don't ever have much hair in the shower drain, but do have what I call are floaties.  A hair flitting here and there.  I do notice more floaties after travel or stressful events.  So attacks do sound appropriate.  However, I think I have had hair loss the whole time since 2009.  

I initially was so focused on my forehead, that I didn't notice hair surreptitiously disappearing from my temples.  I've probably lost 1 1/4 inch from forehead, and 1 inch right temple, 3/4 inch left temple.  This past year it's thinning all over my head, especially on the top.  And I have discovered the back neck hairline is receding also.

By the way, sorry, Cical is short for Cicatricial Alopecia which FFA is.  

Ah, I finally understand what you mean by handle - the handle part of the light brush that you hold.  I was thinking of a handle to pick up the whole machine.  

I really hate to do meds, but will consider Dutasteride.  The 3x a week sounds good.  Thank you for the research.  The 2 women I am in touch with have been on Dutasteride about a month and say it is too soon to notice any difference. 

I too hope someone figures this out.  It is the weirdest thing ever.  I am a CARF Patient Outreach Volunteer for CARF and am in touch with a number of people (at this time women) around the country and recently a woman in England.  Each has her individual story which have similarities, but intriguing differences.  I'm happy to see that CARF is growing and adding docs and researchers that have an interest in Cical and finding a cure/cause.  

And also to enlighten (or get rid of) docs that say "you are going to go bald anyway...."  How crude and rude.

Permalink Reply by SJC on November 21, 2016 at 10:11pm

Nancy & Wyobalance,

If shedding and scalp inflammation constitutes an attack, I have had perpetual attacks since October of last year except for about 6 months of being on Finesteride (which seemed to stop working in July 2016 after a great initial response that included hair growth). I guess I have an extreme case, unfortunately. I've watched 1/4 inch of frontal hair recede since July. Goodness only knows what's been lost in areas I can't see. Hair sheds everywhere - in the shower, when combing, styling, or doing nothing at all. The shedding is diffuse. High dose, longer term Prednisone helps the shedding, yet the side effects are horrible and I have a really hard time staying the course since I don't function well. What a terrible choice - my hair or my ability to function. I have lost about 60% of my hair all over my head since diagnosed in April 2014. At that time I was given hope that since I was seeking treatment at a fairly early stage, I would very likely retain what I had left. That has not been the outcome. My very well known hair derm is very caring, yet I do not want to go on transplant or chemotherapy drugs which are her recommendations for next steps in order to suppress my immune system.

Thank you both for posting as I've been giving up as of late and just wishing it would all fall out. Now I'm thinking of perhaps switching to Dutesteride and may even give the laser a go. Wyo, I too notice huge amounts of shedding during and after travel, which I do a lot of and it is a great pleasure of mine. I mentioned this to a doctor at the CARF conference in NOLA this year and I felt dismissed for making that statement.

Nancy, have you truly had no side effects with the Dutesteride? No mood changes or sexual side effects? It may be placebo, yet I thought I noticed some of this with Finesteride during the first 6 months of treatment (I'm still on it today)and assumed with Dut it would be much worse.

Thanks again to you both for giving me a little hope. I'm going to make a call for a Dut script tomorrow.

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