Comment

Comment by Judy on November 18, 2012 at 8:50pm

Interesting about the clobestasol - I also think my hair is thinning on the scalp but maybe it's an illusion? .... Because the redness is gone now. My dermatologist said to takke the 2 pills together - 400 mg total/day. I questioned that also but she stuck to the 2 together.

Comment by PamW San Diego, CA, USA on November 17, 2012 at 12:29pm

Yes, 200 mg twice a day. I can't imagine taking both pilss together. I am also still taking the Doxy, which I think is actually helping with my rosey cheeks. Clobestasol on the red scalp, but I think it is thinning my hairline.

Comment by ChrisC. Chicago, IL on November 17, 2012 at 12:26pm

The Protopic is alittle sticky as the base is like vaseline. But I only put it at my hairline where the redness exists around the follicles. I am looking into a compounded prescription with the tacrolimus in a Cetaphil lotion base. My derm wrote a script for it but I have yet to get a cost. Will let you know. . .

Comment by ChrisC. Chicago, IL on November 17, 2012 at 12:24pm

I am only taking 200 mg of Plaquinil once per day. Are you both taking a total of 400 mg per day?

Comment by PamW San Diego, CA, USA on November 17, 2012 at 12:18pm

Judy, why are you taking the two pills together? One in the morning, and one at night with food makes it easy for me.

Comment by Judy on November 17, 2012 at 10:26am

Chris, I also wear bangs, glad that is working for you. Because of that I probably did'nt notice the hairline. I started wearing them VERY long to cover the eyebrows - I am terrible at applying pencil - Now that I know what this is, I will look into the tatooing and finding someone who can do the individual lines so it looks more natural. In the meantime I have been using Clinique's eyebrow powder when the bangs get cut too short.

Comment by Judy on November 17, 2012 at 10:17am

My dermatologist told me to use the Clobestasol solution once/day or every other day. The scalp where I apply it immediately cleared up but now I can see how terrible\y thin that area is. Pam, my dermatologist is in Hillcrest and she has one another patient with this. She also said this usually affects women with diaabetes or postmenopauseal. She was suprised when I said I went thru that 30 years ago when I was 40.
Right now I am in Palm Desert and will try to find someone who "specializes" in FAA - Pam, I will interested to know what you think of your dr at UCSD>
Chris, I can't believe the comment your dr made-really professional. I guess they just don't know anything about this.
I think my dermatologist said 2 months also to see if it is working. She took lots of photos. The nausea is really bad and I am taking the 2 pills at night w/food. It comes and goes, and gets better if I keep something in my stomach every hour or so-like applesauce, rice, 7up, etc So much for the diet.
Two years ago, when the eyebrows started, I began taking Thyroid pills and biotin (vitamin) plus using biotin shampoo. Obviously
those things did not work.
Your comments are appreciated. Pam, my email is Jkeller39@aol.com

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

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