Comment

Comment by Debs on July 18, 2013 at 6:30am

Jules, please see the email I have sent you.

Ladies, I am afraid my job as a shift worker is going to prove impossible for me to make the meetings for this focus group. I had wrongly assumed I could discuss the focus group whilst I had my appointment with Dr Harries in Manchester. I have jump through all sorts of hoops to get a day off on a specifc date for medical appointments but I have very little control over where my company puts my days off so I will not be able to respresent us at these meetings.

Sorry Jules to mess you about. xxxx

Comment by Kath UK on July 18, 2013 at 5:28am

Hello Kay, Like Jules, I can only say I wish I had some answers for you! I got the impression from the first (Consultant) dermatologist I saw some years ago about FFA that if the inflammation stopped then the progress of the hairloss would be halted but I've used Clobetasol for several years and though it helps with the irritation and itching it hasn't stopped the hair loss. And some ladies don't seem to have any inflammation and they are still losing hair. I guess the dermatologists simply don't know what will work. What works best for me is a healthy, sensible diet with lots of fruit and vegetables, plenty of sleep, avoiding stress, keeping cheerful and busy ..... and hoping that it 'burns out' - which I have been told can happen. I know it's a lot to deal with. They're bound to come up with a cure eventually, though. Sorry I can't be more help.

Comment by Jules UK on July 18, 2013 at 4:07am

Hi Kay, I wish I had some answers for you. This is so frustrating about FFA. Some of us see Dr Harries who is one of the foremost experts in the disease in the UK, yet his response to most of my questions is always "we don't know". There seems to be a medication route that we all follow and many of us are now on Plaquenil. Trying an anti-inflammatory diet is something Dr Harries says has no evidence to support it, but I do think controlling inflammation is crucial so anything is worth the effort. I learnt more from reading posts on this forum than from Dr appointments!
Julie x

Comment by Simone NJ USA on July 17, 2013 at 10:46pm

Thanks Pam/Alice for your response

Comment by Kay Ayala on July 17, 2013 at 8:27pm

Am I understanding correctly that it is possible to stop the progession of FFA if you can stop the inflammation? Is that our main goal in controlling this disease to stop inflammation? I am going to the doctor tomorrow for my biopsy results (but feel sure FFA is already the diagnosis from what my dermatologist said). I want to make sure I understand as much as I can before I go in there. Is "inflammation" and "active" the same thing? Thank you for any advise. I am overwhelmed with it all and don't know where to start :( diet, drugs, Rogaine??

Comment by Alice on July 17, 2013 at 6:53pm

Simone, I am taking plaquenil snd the last time I saw my derm she scheduled a recall visit in 6 months. I think she will do some blood work then. I see my eye doc once a year. I found clobetasol to be very irritating, something I surely don't need.

Comment by Alice on July 17, 2013 at 6:48pm

Comment by Annie on July 17, 2013 at 3:43pm

It's interesting how different the advice can vary from doctor to doctor. Mine said to rub the Clobetesol on the affected areas of the hairline going back only 1/4 inch. I used it for two months, but it made my scalp so tender that I couldn't even stand to go outside on a windy day. I finally gave up & stopped using it a week ago. I can't tell you how much better my scalp feels.

Comment by Jules UK on July 17, 2013 at 3:08pm

Re steroid cream/lotion, I was told to rub it in along the hairline and up to 1 1/2 " back, twice a day. But because I was worried about thinning skin and didn't have redness, I left it off. I suggested that the hollows were because I'd lost weight but the GP didn't think it was that. It's not like thinning skin.
With Regaine, Dr Harries didn't exactly recommend it. I asked about using it and he said it was worth a try. He doesn't discourage anything as long as it won't cause harm. X

Comment by Rita - Canada on July 17, 2013 at 2:59pm

I was told by my GP that I had thinning(atrophy)of the skin where I put Clobetasol Liquid on.She never really said where to put it and I guess I was wasting my time& thinning my skin by putting it on where hair has already disappeared. Who got clear direction on application method? Who just applies where the itchiness occurs & who applies it here & there where the rest of your hair is.?Do you apply sparingly? I haven't found a great way to do so. Thanks.

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