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Comment by Mel on June 14, 2015 at 11:19pm

Thank you for sharing, Sas Holland. Love the curls. I think they do help to add body around your face and your hair looks great. I don't look good without bangs and I'm not sure they would work if my forehead gets too high ... It's already naturally high. ...it is so strange how it could be moving so slowly... I feel like mine has gotten higher even in the past month but I hate how it's hard to track as it's happening.

Comment by MJ on June 14, 2015 at 9:26pm

Sas Holland,
You have an amazing head of hair! Love the curls! Thank you for sharing the pictures.
MJ

Comment by Sas Holland on June 14, 2015 at 7:22pm

Hi everyone,

I have just uploaded more pictures, because  I think everybody is curious how FFA shows in others (well I am;). But sadly enough there are not many pictures here, so I hope more people will follow,

After my FFA diagnoses last sept 2014 (that showed very little activity) I have not taken any medication or treatment since then. I tried the auto immune diet, but that was very hard and since I don't feel or see any symptoms (like redness, tenderness, itching) I could not see any progress, so I stopped the diet. I only try to reduce stress by Zen meditation 2 a day 20 minutes. This works really well, because now I don't think of my FFA all day long any more.

My FFA seems to be not active at all, that's the reason I am not taking any medication or treatment. But when it does get active again, I might try treatment though.  I have never noticed my hairline receding in the 10 years before, or felt anything. Perhaps I did not see it because I always had curly bangs. But perhaps my hairline is still receding but so slowly I cannot feel or see it?   it started with my eyebrows disappearing in 2004 and I did not think of an illness at that time, because I never had much eyebrow hair. I just had them tattooed, which worked perfectly for me. I have lost all hair on my arms and upper legs as well. I never had much hair there also. I had not noticed that either until the doctors showed me last sept.

PS: Hairsuper's comment seems like an add to me?? I did not see any wigs on that site, just extensions

Comment by Alice on June 14, 2015 at 5:38pm

Sallylwess, I am also trying to disguise a high forehead. Not so easy to wear bangs with curly hair. The video you posted was interesting.  Has anyone had sucess using sunless tanners along the hairline?  There was a discusdion about I a while ago.

Comment by HairSuper on June 14, 2015 at 10:24am

Hello Missy and welcome. I buy all my wigs from www.hairsuper.com. I shop online and pick a wig I like and then I go to youtube and find video of ladies who have purchased the wig to see what it actually looks like. Every wig I have purchased has been great for me.

Comment by Will Be Healed on June 13, 2015 at 6:55pm

Ladies,I started losing hair when I had my second child at the age of 32 and I am now 38. I have lost about half an inch at the top hair line and an inch and a half on my right side above my ear. My left side has thinned but for some reason by right side is worse. My eye brows have thined but thankfully I still have some hair. What keeps me going is my faith in God. I continue to remind myself that Jesus heals and I can and will be healed. Don't get me wronge I do waiver back and forth, but when I keep my focus on God I see less hair loss and more hair growth. Although my growth is minimal, I am thankful for the growth I have and the hair I have left. God gives me hope and he helps me through this. My derm tells me that I have no scarring and that I have the potential to grow more hair back. I pray everyday for Gods healing and I am believing for his healing. I pray that we all keep hope and are healed of this disease.

Comment by Jules UK on June 13, 2015 at 4:14pm

After a long break.... It's interesting to read the different thoughts on Plaquenil. After moving house, (very stressful) I let my Plaquenil prescription lapse. I noticed pretty soon that hairloss worsened. At my derm appt, I was told I'd lost a further 2cm from the left side behind my ear, between August 2014 and June this year. So I'm now back on it. I found that it was really, really hard to contemplate losing still more hair so quickly.
Was it stress or coming off Plaquenil? Who knows. Eye test next week.
Today, I visited my lovely hair man in Cheltenham for new side "whiskers". He's going to try to "razor" the edges so they look more natural. I cut my head at work this week and was so scared the first aider would pull my hair back for a big reveal! I had quite an audience. Fortunately, it ended well with my secret intact.

Comment by sallylwess on June 13, 2015 at 3:25pm

Hi all.  Thank you for all of the discussion on Plaquenil.  I have not taken it.  I had thought of taking it a few months ago when I reacted with rashes to the foam Clobetasol and to the Kenalog injections.  My derm told me I had to see my eye doctor to get the ok, and then, I just decided it was not worth the risk.  I've had FFA from 2006.  It was not diagnosed until 2013.  I have lost all of my eyebrows and at least two inches back of my hair.  I no longer can even cut a bang that doesn't look funny, but as I have let my hair grow, I have been able to do a side long bang that is curly.  My new hairdresser convinced me that it looks like I have a high forehead, but that it doesn't look odd.  She encouraged me to wear my hair as it is after I had actually already given up on the wigs and toppers.  I was uncomfortable in them.  They covered the hair I had left that I still liked.  They were hot and itchy.  I was just at a place of acceptance.  I am wearing my hair that I have left, and I am over stressing about the loss.  I am not treating it.  I am just accepting it.  My hair dressing suggested using a darker shade of bronzer on my hairline to contour and hide the high forehead.  I haven't tried it yet, but I thought you might like to see the youtube video she showed me.  It can be found here:  https://www.youtube.com/watch?v=16mWjaMHRJI  Acceptance is a powerful and freeing thing.  I may find I am less accepting if I lose more hair, but I am at as much peace as possible at this time.  

Comment by Mel on June 13, 2015 at 1:07pm

Thank you, Anne. Good info. It's pretty confusing. ...Interesting about eyebrows first. I wish I knew what happened first. I really don't have leg hair anymore and my eyebrows did not disappear, but thinned. But I didn't even really notice when that happened so I don't know if those things happened before the redness to my hairline, or not.
Maybe the Plaquenil you took has helped -- who knows -- so I'm leery to take it and also afraid somewhat to go agains the dermatologists advice and NOT take it, but that may be a good option for my sanity (?) I'm going to try the foam, Clobetosol.

Comment by Anne Louise on June 13, 2015 at 12:49pm

Hi Lo, My friend with the hair loss still wears it naturally.  You would never know to look at her.  Her bangs start way back, she has very straight hair.  Her eyebrows are tatooed (she was the one who referred me to an excellent eyebrow person) and look very natural.  I think she has had FFA for about 4 years and has been on and off Plaquenil during that time.

I have very thick curly hair and began with a low hairline, so thankfully the hairloss is not noticeable to others.  I now sport bangs, which are a bit tricky and took some getting used to with my curls, but now I like them.  My hair stylist calls bangs cheap botox!  The skin on my forehead seems to have changed and is sort of bumpy...maybe it's age, maybe it's the FFA, or maybe it's been like that for years but I've only put it under a microscope since my diagnosis ;-).

My hair loss has been very slow.  I first noticed it around Thanksgiving '13, and since then it's only about a 1/2 inch or so. My derm in March remarked that i've stabilized and my hair stylist insists she doesn't see any loss, but I'm not so sure.  Now that I have bangs I don't monitor and stare every day at my hairline.  I was taking photos of my eyebrows and hairline every month, but I havne't done that since last June.

I swear I read somewhere that if eyebrow loss occurs first the case tends to be more mild.  But now I can't seem to find that article.  I have lost my thick dark eyebrows completely, over the course of a year.  If my hair remains like it is now I would be one happy lady!

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