Comment

Comment by PamW San Diego, CA, USA on November 16, 2012 at 11:40pm

Chris, is the Protopic messy? I think I am using the Clobestasol too much. I have an appointment with a dermatologist from UCSD in two weeks and I will ask about Protopic if you think it works.

Comment by ChrisC. Chicago, IL on November 16, 2012 at 11:33pm

Hi Judy, Welcome to the group. . . even though we wish it weren't so, this group is a great source for sharing and questions. Our experiences are all so similar and it helps to get a few answers. . . even if it isn't as definitive as we would all like. I was diagnosed through biopsy just about exactly a year ago. I felt sad, disappointed and numb—started with Minoxidil, Finestride and Clobetasol(steriods). The steroids were applied with injections and the solution.It may have slowed things a bit, but skin where I was applying the steroids got quite thin. My dermatologist was not as experienced with hair loss, I changed doctors in September to Dr. Barbosa who participated in the CARF symposium and has more experience treating cicatricial alopecias. She put me on Protopic anti-inflammatory cream as well as the Hyroxychloride. The Protopic has really diminished the redness and supposedly the hydroxychloride takes several months for to start working—so I'm waiting on that. I take it right before bed and try to have a small bit of food with it—like a 1/2 banana or alittle yogurt. So far I have only had one instance of nausea and it was taking on an empty stomach. Too early to tell if it is working.
I'm 57 and like you, didn't really pay much attention to the receding hairline but really noticed my eyebrows initially. Thought it was hormone - related so raised the query with my gynecologist. Her response. . . that's what they make eyebrow pencils for. Really. Anyway, the timing sounds exactly the same—about 2 years of eyebrow loss, no real redness or obvious follicle bumps, overall hair thinning and finally noticable receding hairline in photographs.So it has been a year of ups and downs. I style my hair with bangs now and even get compliments on my new style. So, I feel like I'm in a holding pattern now. . . I'm not as terrified.

Comment by PamW San Diego, CA, USA on November 16, 2012 at 11:24pm

Hi, Judy. I am taking plaquenil since the beginning Of August. I don't know if it is helping because I don't know what I would be like if I didn't take it. Did you have an eye exam before you started? Also, take the medicine with food, it will help with the stomach problems. I live in San Diego also. Email me at pamw31@gmail.com

Comment by Judy on November 16, 2012 at 9:16pm

Hi all, I have a few comments to these discussions if I can figure out HOW to comment - I am new to this.
I was diagnosed with FAA 10 days ago and it seems I must have had this for some time. Loss of hair on legs and arms for many
years, loss of eyebrows 2 years, which really was upsetting. I kept asking my dr about it and she would say ... It was just part of getting old!!!! My hair loss is 1-2" and I was so ignorant about what was happening that I just ignored it.
2. My dermatologist put me on Hydroxychloride (anti-malarial) med and the steroid med, . I was very reluctant to take the Hydroxy.... because of the MANY MANY side effects but learned that the eye problems only come after long use. My dermatologist felt that it "might" stop the loss and was worth a try. Does anyone else take it and have they had side effects???
I have been sick (stomach related) for 10 days but decided to
keep on it for another week or two.
It is amazing how upsetting this is and how noone else thinks it is a big deal - there are so many emotions popping up!
3. I am supposed to swim for excercise but this also bothers me.
Does anyone else swim and how do you handle it??

Comment by Judy on November 16, 2012 at 8:57pm

Comment by Debs on November 14, 2012 at 11:59am

Celia, another question for Dr Harries... a lot of us are using steroid lotions (dermaovate and betnovate etc.) is it safe for us to use steroid lotions for a long period of time? We all seem to have been given instructions by our derms as to how long to use them for. Many thanks xx

Comment by Debs on November 14, 2012 at 4:01am

Jules you don't need to get a custom made wig (unless you want to) an average size wig will fit 95% of people and you can loosen/tighten it to suit your head with little straps inside (ike a bra strap to get the picture but much smaller!) because we have a medical condtion we dont have to pay VAT - so online you can order and wig and ask for VAT to be knocked off.

Comment by Jules UK on November 13, 2012 at 4:31pm

Has anyone lost hair from the back, or lost their eyelashes? Heidi's photo looks great, by the way. I'd never guess she had hairloss?

Comment by MairiM on November 13, 2012 at 3:40pm

If anyone is worried about privacy on the Facebook page, perhaps its better to turn Notifications 'OFF' and just check out the page from time to time. If you leave yourself logged on to FB, as I often do on my ipad, people can (partially) see the FFA comments in the Notifications list.

Comment by MairiM on November 13, 2012 at 3:29pm

Question for Doctor Harries - In patients where he has seen the FFA burn out, how likely is it to return?

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