so I got diagnosed with ulerythema ophryogenes today, because I have red eyebrows, slightly red cheeks and goose bump like skin. Now, I know there is not really a 100% working treatment or cure out there, and any cream I have tried is not really working.
And also, my doctor told me theres a small chance to have decreased semen quality, what is the chance of getting this when you have UO? I'd like very much to avoid that

Also, I know probably this has been asked before, but are there any way at all to remove the redness in my eyebrows at all? Someone managed to treat theirs?

Hi

That's a new one about the semen quality - not sure where your derm got that one from.

I have UO - started around age 13. I am now 47 () so have had a long time to read up on it.

I wasn't diagnosed with UO until age 37 by which time the damage had been done (ie. red scarring and outer eyebrows gone).

I had two PDL treatments on cheeks and eyebrows that helped reduced the redness. Because I'm female I just pencil my missing eyebrows in.

If you don't mind me asking how old are you at the moment? Has your dermatologist recommended anything to use?

You probably know that the bumps on your arms are Keratosis pilaris and possibley the redness on the face is caused by KPRF or KPAF. I have these also. So if you have any questions you want to throw at me feel free.

There are treatments out there to help reduce the redness and keratin. Your dermatologist should be able to help you with these - if you want to know more about them though just ask

regards
Anne

i like wearing a mask

Anne . I have same since 4yrs and am 38yrs now. Only today I realised its UO . Its more of a combination of Seb Derm and UO. My eyebrows have tons of flaking and peeling skin and white bumps attached to hair follicles hence all the eyerbrow loss. Did you have the white heads in your brows too ? and I have it all over my brows not just outer third

Hi Selby

My UO appeared around age 14 with the other KP bumps on my arms etc. Did you have bad KP (keratosis pilaris) on your arms in your teens? UO however can start in early childhood.

The whiteheads are probably keratin plugs if it is UO.

Yes I still get bumps around eyebrows and they are often itchy (not so much flakey though so that may be the seb derm with you).

Do you have KP bumps anywhere else still? Do you have any red scarring in the outer part of the eyebrows where there is hairloss?

As far as treatment goes:

If you are bothered by redness in the area PDL laser has helped me reduce this.

I have not tried anything to do with replacing hair as I just pencil eyebrows in every day but a person on this forum (male) has had success with a hair transplant so check out that thread if interested.

To help reduce the keratin bumps I use retin-a cream (usually only availabe on prescription) it helps sloth off the dead layers of skin and thereby remove the keratin bumps that get trapped i the hair follicule. You have to be careful with this cream as it contains retinoic acid and can irritate skin if overused.

Also when eyebrows get itchy I have used a product called KP Oleum made by a NZ pharmacist (my son was showing signs of UO and I used this with him and it got rid of the red bumps). Its contains extra virgin coconut oil. Koru kp Oleum - Koru Pharmaceuticals

hope this is of some help

Let me know if I can help further
regards
Anne

Anne, I have KP on back of my arms but I can handle that it does not bother me that much as I rarely wear short sleaves. However the eyebrows is a real concern as I have lost half already and there are bald spots all over. Is there no hope for re-growth ? I guess not because I am noticing that even where they are regrowing the follicle again gets filled with the kertain plugs and upon removing the plugs the hair comes of easy as I think it stops getting nourishment to survive as the keratin fills up the follicle and the hair kinda dies. .
Have you tried EPSOM SALT ? I was reading the KP forum and people have foudn this to be very effective but wanted your opinion on it? After all UO is a variant of KP so i believe this should work to UO equally well?
Do you have any brows or have you lost all ? I am scared of loosing alll. As far as redness I do have that in the outer third and more so if I use towel to scrub or wipe. As long as I dont use towel its usually not red nor itchy. I do get itchy all over the brows if I have not washed in a while. ihad stopped washing as it was so sad to see brows falling off that easy after each bath and to see the white plugs and dead skin peeling as well.
Have you tried the EFAs ? Fish Oil ? I believe smoetime back when I was on it the plugs were not that prominent but I always had some level of flaking so I maybe a weird combo of both lack of sebum and excess sebum. I heard KP is lack of sebum yet my T zone is excessive oily with tons of black heads and open pores. How is your facial skin in general ?
How about Lactic acid ointments etc if I dont wanna go Retin-A route? As I heard so many ill effects of retin a that am scared to step that direction.
Thanks for all the info.
Sebby

Hi Sebby

Yes Lactic Acid and any of the AHA's would be more gentle - so you could perhaps try them.

How is your diet in general? - I have found that eating a healthy diet containing high omega 3's & 6's ie fish oil, tinned fish, avocadoes, walnuts and generally cutting down on refined flour and sugar does help the overall feel and look of my skin.

I has not however cured by UO. It would appear that your hair follicule aren't dead as they are still producing hair. If you could stop the keratin from plugging up the brow area you may well experience regrowth. My outer third of eyebrows are all gone - have been for 30 years and nothing is going to make them grow back naturally.

If you do have UO you will not loose anymore - It is pretty much standard with everyone that only the outer third of the brow is ever lost (don't ask me why!)

Glad redness is not a problem with you. Ulerythema Ophryogenes stands for:

Ul - scarring
erythema - redness
Ophryo - of the eyebrows
Genes - genetic (I think)

so my outer brow is permanently dark pink (was red but laser has reduced this) from the scarring left by UO.

It would be intereresting to get your derm to check if the hair follicules in that area are still active.

Have never tried epsom salts. As I was not diagnosed until your age and by then the damage had been done I have not tried a lot of treatments except the laser for redness, diet for skin tone and retina for the off KP bumps.

Your skins sounds at a different stage to mine so best to check with your derm as to what they suggest. Are you happy with the treatment they are offering or have they suggested nothing?

Sometimes finding a helpful derm is half the battle with this.
Sorry I am not being of much help - but would suggest that you check out if the hair follicules are still active and you may be able to get some hair growth in the area.

Hi Anne,
Thanks for replying.
I tried Aquaphor on the brows as suggested by someone on this forum but I got very itchy by morning. Have you ever ?
I think next I will try AmLactin as its OTC>
I have not seen a derm yet as I was trying to get as much info as I can on my own before seeing one.
I just read past posts by someone called jason who apparently is now banned from posting (do you know why so as he seemed nice). He mentioned how SAD (social anxiety disorder) might be linked to skin issues. Do you have this and have you tried medications to treat this disorder? I am asking because I certainly have some degree of SAD.
As far as my diet its pretty healthy. I rarely eat out and not much white sugar or processed food either. I am vegan so dont eat much fish or meat except occasionally. Hence I supplement with fish oil.
I am very keen to hear back from you on these topics.

Thanks
Sebby

Hi Sebby

Jason was really nice and added a lot to the forum. Jason did not have UO however - he had KPRF which is KP bumps on the lower/outer cheeks that cause redness and flushing. I have never used aquaphor (not even sure what it is sorry). Only things used have been KP oleum and retina-a.

I don't really want to go into why Jason was banned but if you look at the SAD thread you will probably get an idea of what happened.

SAD is sometimes an outcome of having something disfiguring/embarrassing happening with your face. A lot of people with the rare KPAF/KPRF symptoms suffer from various things like depression, anxiety, OCD etc due to the prolonged nature of the illness and the lack of treatments. Also the age at which it hits (usually the teens) adds to the pain.

I certainly suffered a lot of this stuff over the years and have been on prozac for some of this. However I have worked at building my selfesteem and have had counselling and prayer for a lot of the inner healing stuff and am now medication free I often think these conditions can affect you as much on the inside as the outside sometimes.

Sounds like your diet is very good. When you finally get to see a derm you should talk about the emotional effects this is having on you and also to see what they recommend.

Wishing you all the best
Anne

Anne and Sebby,

I just read about treating thinning eyebrows with castor oil.

"Regular application of castor oil helps in better growth of eyebrows and eye lashes. For this remedial effect one needs to apply castor oil on eyelashes and on eyebrows regularly two times per day.
FROM Uses and Applications for Castor Oil - Benefits of Castor Oil for Hair - Castor Oil Remedies

I do not speak from personal experience. Just wanted to post this if anyone is still interested in this topic.

kebod

__________________
My treatment: Oil pulling daily; candida diet (minimum of carbs, no sugars); omega-3 from canned salmon and sardines; sun exposure 10-15 minutes, 3 days a week, without sunblock; program to strengthen immune system; probiotic supplements; lots of water; moderate daily exercise; exfoliation with epsom salts and sugar several times a week. KP reduced 99%. If I go "off diet" -- grains, sugars, etc. -- or stop oil pulling, KP returns.

Kebod,
No external application really helps because the problem is internal. Unless the keratin plugs can be prevented from happening in first place. Do you think Oil Pulling can cure this ? I have done for a week but not seeing much change on face. What do you suggest ? You have been doing OP for looooong ...by now how much % are you cured with OP ?

THanks
Sebby

I don't know if oil pulling would help, because I don't have thin eyebrows. My KP lessened by about 85% after 3 weeks of oil pulling, but the time will be different for everyone. All you can do is try it for at least 30 days. Please let us know if it helps or not.

kebod

__________________
My treatment: Oil pulling daily; candida diet (minimum of carbs, no sugars); omega-3 from canned salmon and sardines; sun exposure 10-15 minutes, 3 days a week, without sunblock; program to strengthen immune system; probiotic supplements; lots of water; moderate daily exercise; exfoliation with epsom salts and sugar several times a week. KP reduced 99%. If I go "off diet" -- grains, sugars, etc. -- or stop oil pulling, KP returns.

Kebod,

I think OP has the potential to help UO as well ..as basically it is the same problem of over kertanisation in a different place. I do feel like my skin has softened and the plugs are less than before starting OP. Its just been 10 days yet.

You said you are off sugars. What about fruits ? Do you do green smoothies ? How much green do you get on an average ? I have started doing green smoothies and will let you know how it all goes.

Thanks
Sebby.

No fruit, either. Fruit contain fructose, a sugar. A friend just told me about green smoothies -- all veggies -- and I want to try it. What is your green smoothie recipe?

I try to eat about 3 times (by volume) more greens than protein per meal.

kebod

__________________
My treatment: Oil pulling daily; candida diet (minimum of carbs, no sugars); omega-3 from canned salmon and sardines; sun exposure 10-15 minutes, 3 days a week, without sunblock; program to strengthen immune system; probiotic supplements; lots of water; moderate daily exercise; exfoliation with epsom salts and sugar several times a week. KP reduced 99%. If I go "off diet" -- grains, sugars, etc. -- or stop oil pulling, KP returns.

I believe its the processed white sugar which is bad as its devoid of all nutrients but fructose should be fine ,if not overdone, as its a whole food that you are consuming with all other nutrients intact in fruit. The green smoothie I started with was spinach, collard, lettuce. banana, berries in water base. I also use pumpkin seed milk sometime as am trying to take as less dairy as possible. You can also do the smoothie with just the leafy vegies but it might be hard to digest because you will not find iit palatable, otherwise there is no problem in a pure green smoothie. However, the other option is to juice in whichcase you can just gulp it down as there will be no fibre to digest, for which you need a good juicer as well. For smoothie you need atleast a 600 watt blender so it can blende the kale and collards if you decide to use these as it breaks down the hard cellulose to make it more digestible.