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Comment by PamW San Diego, CA, USA on January 13, 2013 at 1:58pm

Crazy disease.

Comment by Debs on January 13, 2013 at 1:11pm

Hi Pam, I don't have any white flakes. My scalp doesn't feel any different than before I had FFA. I have the dermovate lotion, I am not using it simply because I have not got any reddness or visible iritation. My hair however is continuing to receed.

Comment by KarenGinny - Iowa, US on January 13, 2013 at 12:29pm

PamW - I thought I would comment on the red scalp issues, My scalp has times when it's relatively normal but right now in winter it is really dry and flaky and a little itchy - like dandruff. The front bare parts of my scalp are white and not irritated - only irritation is on the part with hair. When my hair loss first started 1 1/2 years ago it was more irritated and very itchy - that's when I first saw my dermatologist and was prescribed the Clobetasol. I haven't used that in a while and usually use T-gel shampoo to control the itchiness and flaking. I'm not on any other meds since my doc didn't recommend anything as most of my hair loss was already done. If it gets worse I will go back to the clobetasol.

Comment by PamW San Diego, CA, USA on January 13, 2013 at 11:37am

When I first went to the doctor, she took a boat load of tests. Everything checked out, but I am scheduled to go back this week and I am going to ask. Was the redness on your bald areas? my redness is in the center part of my scalp. Bald areas are white. Also, does anyone have white flakes?

Comment by Judy on January 13, 2013 at 12:24am

I have been using it every 2-3 days on all the "bare" areas but that is a question I need to ask her by email. Forgot at appointment. Originally she said to use every day or every other day - that was when it was so red.
Pam, have you had your blood checked? She sent me for 2 tests that my regular doctor hasn't done. Also she was questioning that my protein level was low and iron near low mark. Both are important to be near to normal.

Comment by PamW San Diego, CA, USA on January 13, 2013 at 12:04am

I only use it when my scalp is itchy or inflamed. how often do you use it?

Comment by Judy on January 13, 2013 at 12:03am

Thanks Pam. I always go to the site through email and wasn't sure of the website. I am happy about the interest she showed.
Yours (and others symptoms certainly seems to be mysterious the way they change. How long are you supposed to give Actos a trial? Don't give up if you still have some time left - there are always "ups and downs" for most things. But still, I wonder why yours can change so much. How often are you using the Clobosel?

Comment by PamW San Diego, CA, USA on January 12, 2013 at 10:44pm

There is nothing better than hope! I had a whole week of a peaceful scalp and it is acting up again today - redness is back. I think you should tell her about alopeciaworld.com and to look for the frontal fibrosing alopecia group. I am thinking that Actos really isn't helping, so I am not sure how long to stay on it.

Comment by Judy on January 12, 2013 at 10:27pm

She also said sometimes it is possible for hair to return in some degree. Sorry I can't be more specific because I got a quite confused about that. I was so surprised as I thought it was impossible for hair to grow back with FAA.
One thing very intesting at the appointment was: first appointment she took photos of the hairline and it looked AWFUL!!!! Lots of red bumps and inflamation. So different compared to this time - 2 months later

Comment by Judy on January 12, 2013 at 10:12pm

Hi, sorry I am so late in getting back. Pam, it was a good and informative appointment. My dermatologist, Dr. Pelle, is very familiar with our disease and also very interested in the medical part, blood reports, etc. She said most of the patients she has seen are between 40-60 and I asked WHY ME? at 72? She thinks I was healthy and it was delayed. I was so surprised at that )the healthy part - I don't especially see it that way) and it felt good! I have never had the pain you talk about - glad you are without now. However, I have bad chronic pain from arthritis and have often missed other pain so maybe I just don't know.
I had good news. It seems the hair loss is slowing or stopping, there is no reddness so I am to continue same treatment for 2 more months - Plaquenil 2/200mg/day and Clobestol.
What you all might be interested in......Dr Pelle is interested in our website and would like to visit it. I was so busy and not able to be on the computer this week that I haven't sent it to her yet. I will on Monday. This is good news, yes?
Could one of you techies please tell me what website I should send to her? Hugs to all, Judy from San Diego

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