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Comment by Sas Holland on June 18, 2015 at 11:05am

oh really Liz, thanks for telling me, I did not know that! Thanks for telling me I will remove the pictures that show my FFA  off this site!

Comment by Liz on June 18, 2015 at 4:04am

Morning ladies. I hope everyone is well. Just a reminder to anyone new or who doesn't know, if you post a picture on this site it will then show up on a Google image search for FFA. Some of us have found this out the hard way, including myself. So, unless you want your photographs shared with the world please email them privately to each other.

Comment by Mel on June 18, 2015 at 12:23am

Oh my goodness. So much experimentation and so many different experiences. I wish it was simpler. Thank you sallylwess, Cheryl and MJ. All very interesting. ...that is amazing to hear of your hairline hair growth, Cheryl.

Comment by sallylwess on June 17, 2015 at 11:33pm

Mel, Yes, I had problems with clobetesol.  It irritated my scalp very badly.  It even irritated my hands and I was applying it with gloves to my scalp because of the hand irritation.  Finally, when my scalp kept getting worse, I told my doctor what was going on.  He said that it must be the clobetesol and he prescribed another drug called "DermaSmooth."  It made me break out in a rash.  I also developed a rash on my face and neck the day after my third series of Kenalog shots.  So, I know these are anti-inflammatory drugs, but they can cause problems. I took pictures to show my doctor so he would see what happened.  As a side note:  I saw the dermatologist yesterday.  I am not over this by any means, but my scalp looks better with no drugs than it did when I was treating the disease.  

Comment by Cheryl on June 17, 2015 at 11:15pm

I use Hydrocortisone Butyrate, a similar drug to Clobetesol, 3 times a week. It has worked well for me, and my scalp is doing much better. I am also taking Plaquenil and finasteride and am having some success with new hair growth on my eyebrows and hairline. I am part of the research group out of Portland Or. My dermatologist has over 100 patients with FFA. My dermatologist is surprised to see the hair growth, I am realistic and don't expect tons, but it is a step in the right direction. You might see if you can use something besides clobetsol, everyone responds differently to drugs. I hope this helps :)

Comment by MJ on June 17, 2015 at 10:54pm

Iuse the clobetasol solution which is a clear liquid that can easily applied in small drops. Never had any problems from it. I was first given other forms like a spray and a cream and although they didn't irritate, they Made a mess of my hair.

Comment by Mel on June 17, 2015 at 10:23pm

I started Clobetesol about five days ago, 2x per day. It seemed good on day 1-1.5. But now I really feel it is causing redness, inflammation and hair thinning! The dermatologist said that is not possible since it's an anti inflammatory drug, and she said it's meant to help slow or stop the underlying cause. I don't want to be stupid and go against her advice to not treat this and I really want my hair to calm down and stay put, but I think tonight I am going to wash off that area (to wash off this morning's application) and just go back to applying something like coconut oil, which maybe I was imagining, but seemed to be calming it??? Has anyone had trouble with Clobetesol?

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

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