New here and not sure if anyone is on this board. I'm very depressed...I've got UO and have since I was 12. I'm now in my 30's. I've tried IPL laser once, and PDL once. No help. I've tried Hydrocort 2%, Elidel, Retin-A, Lotion, Scar Serum, scrubbing, face cleansers, Carmol-40, and Rogaine to try and get the hair to come back. Nothing works. I want the red gone priority 1, then the hair to come back is #2. Now I use Eucerin Redness Relief, but the lotion is cloggy looking and white in the eyebrow. I'm lost and hate the way it looks. Help anyone, please if you can. I just went to a department store and passed by one of those mirrors in the makeup section...made me pull my hat down tighter because all I saw was the red screaming out from half my eyebrows like a freak.

Redbrow

Hi, I have ulerythema ophryogenes and am about to take my 11 year old son to the derm this month as he too is showing the first symptoms.
I have studied this condition for quite a while and my plan of attack for my son is:
1) ask about the mondixil (not sure of spelling) cream that is talked about in the post below as this seems to have been successful in restoring the hair.
2) as regards to the redness - PDL treatment is the best option. You will find on the net a medical journal article written by a team from Cardiff Wales - who used PDL treatment on this condition and it's variant (atrophoderma vermiculata). Most patients require more than one treatment. I have had one PDL treatment myself and once more funds become available will consider further treatments.
I encourage you not to give up.

Regards
Anne

Hi everyone,

Visited these forums just over a year ago when my daughter was finally diagnosed as a KP sufferer. She has the UO to her face, all the usual symptoms...flushed rough cheeks...this stretches right down her neck, affecting her ears too and the sparse eyebrows. She first showed signs as a toddler..GP said it was ezcema but nothing ever worked and she was referred to a dermy at 12 who told us the real diagnosis. She has been referred for laser by the NHS, this has taken a year to finally be told she does not meet their criteria...received this news today and haven't got the heart to tell her yet....she so wanted this treatment, her life has been miserable for so many years....taunts of "sand paper face, tomato cheeks" these being the kinder remarks. I am gutted and she is going to be devastated.

Anne, thanks for the words. It's called Minoxidil, get the 5% that Harmy talks about, you can get it over the counter. I don't think it worked on me even though I quit after about 3 months.

Sweetpea, that is aweful news. You can still do the PDL if you pay for it...usually about $300-$500 a session here in the USA. If you can't pay for it, start the behaviorist/cognitive therapy now that will teach her to ignore the comments of stupid people, and feel great about herself. The roughest times were not in school for me...it was my early twenties when I was out trying to be social and seeking companionship. Start saving for the PDL if that doesn't work, just in case. All of that advice is just my humble opinion, of course you can do what you want too.

I, like Anne, have had this condition for a long time, and we are battling for something to work. Her child now has it which makes it extra priority for her as it would for me if my child had it. I will help anyone however I can. My current experimentation is following a well know saying in the derm world: a combination of treatments is better than a single approach. Problem is then you don't know what actually worked, or maybe it was everything together. Here is my regimen I started 2 weeks ago. I will go for a full year and report progress or no progress, but I'm sticking to it. There is no quick fix and I've tried it all at one time or another.

Morning: Shower while scrubbing face lightly with body soap, then apply Carmol 40 or Elidel (for softening the rough skin), then apply Eucerin Redness Relief lotion with green tint to cover up.

Evening: Wash entire face with Eucerin Redness Relief face wash, then Eucerin Redness Relief night cream on cheeks, and Rogaine 5% Minoxidil dabbed on eyebrows.

Pain in the butt, but the human brain takes 21 days of doing a routine before it becomes a solid habit. We'll see if it all works or not.

I want more discussion out there...some reply or post and then don't come back for months it seems...sad and depressing for us who would like to stick together. Hopefully with this board now being free it will attract more with red sparse eyebrows and flush red cheeks.

Redbrow

Hi Redbrow - we are off to the Derm in Dunedin (NZ) tomorrow. Do you guys understand the internal processes going on in your body that makes it behave this way. Just throwing out some questions - why for a lot of people does this condition just kick in at puberty\pre puberty? Professor Cunliffe wrote an interesting article that said 'Roaccutane' (taken internally) was able to help a patient with this condition. (for me however it made no difference) I am going to discuss these issues with the derm I see tomorrow. In my way of thinking it would be so much better to attack the root of the problem that trying to just fight the external effects. My skin was fine until 13 and then all hell broke loose, my eyebrow disappeared and become red, my skin become rought and constantly flushed. However now in my 40's it has all settled down again by itself but the redness and scrarring on my cheeks and eyebrows still remain however it does not 'flare up' like it used to. What has changed from when I was 13 to now??? Some articles say that boys are more effected than girls - why? My son is under a pediatrician as he has a congenital heart condition (this skin condition is often associated with other defects). The pedeatrician advised me that a team of genetists would be keen to look at the whole thing because of it's rarity and the fact it is showing in two generations. New Zealand is a small country but I am praying that the right people will get involved here to find some real answers. Because these conditions are rare I believe not that much research has been done into them. My big question I want answered it why did my body start behaving this way? and is there anything I can do to make the 'keritinazation' process in my body behave normally? - a big question - but if I don't ask I will never find the answer. Don't give up guys. I encourage you all to keep sharing your successes and your down times. I so appreciate knowing that I am not alone in all this.

Hi Sweetpea - I am not sure if I have already mentioned this to you (please forgive me if I have). The following medical journal report was written by a team of doctors based in Cardiff. They are obviously into reasearching the whole area of PDL treatment and I though maybe they may be interested in doing treatment on your daughter on a research basis. the article reads:

'Treatment of keratosis pilaris atrophicans with the pulsed tunable dye laser.

Clark SM, Mills CM, Lanigan SW.

Department of Dermatology, University Hospital of Wales, Cardiff, Wales, UK.

BACKGROUND: Few therapies are currently available to treat keratosis pilaris atrophicans (KPA), a spectrum of disorders which includes ulerythema ophryogenes and atrophoderma vermiculata. OBJECTIVE: To evaluate the response of KPA to treatment with the pulsed dye laser (PDL) with regard to improvements in erythema and skin roughness, treatment tolerability, and side effects. METHODS: Treatment of all facial areas involved with KPA with the PDL at 585 nm was evaluated in 12 patients. Prior to and after each treatment skin erythema was estimated using an erythema meter, and skin roughness was analysed using micrometer evaluation of a skin surface biopsy taken from the same mapped area and analysed by computer to calculate the roughness profile. RESULTS: Patients received 2 to 8 treatments with the PDL with energies ranging from 6.0 to 7.5 J/cm2. Clinical improvement was noted in all patients with significant reduction in erythema scores. Pre-treatment scores ranged from 4 to 13 (mean 8.3) and post-treatment 0 to 8 (mean 3.1) (P < 0.05). Improvements in skin roughness were clinically apparent in all but two patients, but these were not significant on evaluation of skin surface biopsies. Treatment was generally well tolerated, and side effects other than local pain during treatment were very few. CONCLUSION: PDL treatment appears to be a safe and effective treatment for the erythema associated with KPA but does not give significant improvement in associated skin roughness.
(READ ARTICLE WITH BEFORE/AFTER PHOTOS HERE)
PMID: 11360333 [PubMed - indexed for MEDLINE] ,

You should be able to access the article through 'google' let me know if not and I will send you the homepage. I live in NZ and have in the past written to authors of medical journal articles about this condition and found they are only too happy to help. If I was you I would write to them direct advising of your situation and ask for advise on where to head and if they would consider doing several treatments on your daughters skin.

I encourage you not to give up - keep knocking on every door and eventually one will open

Regards
Anne Gorman

Anne, it's a genetic condition. You can't treat the root cause. It's associated with a defect in Gene 18 of your DNA from what I have read.

yes it is genetic in that the keritinization process is disrupted for some reason in the teens (or there abouts) but most people are not born with red eyebrows etc. Professor Cunliffe of Leeds used Roaccutane (Isotretinion) on a patient (in her 40's) and the redness abated significantly. My son up to a few months ago had perfect skin and eyebrows. The question I would like answered is what is kicking into action now to cause this redness than didn't effect him a few months ago. For me a mother having gone through the hell of this condition in my teens, I would if at all possible like to research and ask if there is anything to be done to normalise this keritinization process to prevent the damage.

I'm with you Anne. Anything you can find out would be great. I too lived through the hell and still am. It would be nice to find a treatment for your son before the damage sets in...for me it's probably too late. I just want to minimize the look of the damage already created. Minimize or eliminate the redness, and get some hair to grow back if possible. I eagerly await your conversation with the derm!

Well good news I guess - the derm is not totally convinced my son has the condition so we will just keep an eye on it at this stage. I asked him about available treatments. He said their were three known to help:
1) roaccutane
2) retina-A type cream (we call it Retinova in NZ)
3) pulse dye laser treatment
I asked if anyone knew of why it started when it does - as I expected he said - 'no'.

I have tried all the above three treatments. Roaccutane had no success with my but would be worth trying if you haven't already (it is also known as Isotretion)
I have got another prescription for Retina-A cream as it does improve the texture of my skin but should only be used in the smallest amounts. I have decided to persue the third option also. I have had one treatment 3 years ago but at the time we only had one laser available at the other end of the country. I found out during my visit to the derm that their is a 2nd one only 3hrs drive from where I live so I am looking into further treatments. For me I believe this is the only way to produce a permanent change. I not only have the eyebrow thing but also 'atrophoderma vermiculata' which creates redness and roughness on the cheeks. I assume the above treatments would also help the eyebrow area. Will let you know of progress.

Good to hear from you Anne. Let me know if your PDL works to get the red off the eyebrows. I had one treatment and it didn't for me. Also, be aware they will shave any eyebrow hair (what little you might have) over the treatment area to avoid the hair catching fire. Keep us updated.

Redbrow

It has been 10 weeks now since my second laser treatment and my skin is finally healed. It has taken this long for the bruise marks to disappear completely. I am pleased with the results as my skin is a lot less red and I need minimal make-up now to make it look normal whereas before I had to use a lot of concealers to block out the redness.

My skin is by no means perfect though - but it is better. Please note that I the laser treatment to treat the redness on my eyebrows caused by Ulerythema Ophryogenes and also the redness in the cheek area caused by Atrophoderma Vermiculata. Two medical studies done on treatment for AV show that it can take up to 8 treatments to get optimum results - I guess it depends on the degree of redness. These reports were done some years ago though and since then the laser used to treat red lesions has been improved. I had treatment with the latest V-beam pulse dyed laser which is the laser of choice to treat redness apparently.

I am seeing my dermatologist this week to discuss where to from here and also to get him to look at my 12 year old son who is showing signs of UO (some eyebrow hair has fallen out).

Those of you with UO out there can you remember when the hair loss started??? I think with me it was around 13. I will let you know if the derm suggests anything to stop further hair loss or better still ideas for regrowth.

Hello all,

Its been a long time since I logged in. Just want to update you on my progression with UO. I continue to lose hair (so frustrating) but the redness is minimal now. I used azelaic acid for about 6 mos. which really helped reduce the redness, but also slowly began to cause my eyebrows to become very flaky. I stopped the azelaic acid about 2 mos ago, and now just use Berts Bees milk and honey lotion ( to keep the skin moist), and desowen lotion or fluocinonide gel to slow down the flaking, and tame the occassional redness.
Does anyone else out there have the excessive flaking? I bought a small mirror (10 x magnification) and can really see all the flakes I never noticed before. I have also noticed that fine white hairs are taking the place of the eyebrow hairs that I've lost. I hope this means that the hair follicles are still viable. My redness is mainly concentrated in and above the eyebrow, into my forehead alittle bit, and the skin there has thickened. Ugh, what I hate most about this condition is how obsessed I am about my appearance!!!
I did try minoxidil, but gave up after 2 weeks because my eyebrows became extremely red and puffy, like a burn.
My derm is no help at all, she just calls in perscriptions for treatments I choose to try because I have researched them. I mentioned an article I had read about a study at BU about emu oil, and she just blew it off as quackery. Any body tried emu oil?
Keep the faith. jenny

Hi Jenny - just looked up Azelaic acid as never heard of it before. Apart from reducing the redness did it stop eyebrow hair from falling out???

Here is an outline of what it is meant to do:
Antibacterial - it reduces the growth of bacteria in the follicle (Proprionibacterium acnes and Staphylococcus epidermidis)
Keratolytic & comedolytic - it returns to normal the disordered growth of the skin cells lining the follicle
A scavenger of free radicals - i.e. it reduces inflammation.

Anyone else been prescribed this by their derm???

Hi Anne,

I'm sorry to say that nothing I have tried, including azelaic acid, stops the eyebrow hair from falling out. I am noticing that I do have fine, blonde hairs where the eyebrow hair used to be. (does anyone else?) And both of my entire eyebrows are involved with the redness and flaking, sloughing acutually. I've lost most of the outer 2/3rds of my eyebrows, and I pencil in over the fine blonde hairs to fill it in.
I had decided to try the azalex because I often have rosacea-like redness over my nose and cheeks (especially after exercise or cold weather). Its now thought that rosacea is caused by demodex mites (which live in our hair follicles; gross!).
My U.O. is adult-onset, started in my late 30's. I have just recently started using emu oil, which is being credited for regrowth of hair in recent trials. I've tapered off the azalex because of the excess flaking/sloughing, which seems to be getting worse anyway.
I hope that all of our experimenting will lead us to some answers. Keep going! jenny