Comment

Comment by Liz on November 23, 2012 at 2:52am

I guess that I have very little faith in the person (doctor) I saw. He saw me for no more than 15 minutes, prescribed 8 weeks of medication and then no follow up until next June. How on earth would he have any idea if the medication had worked? He also said 'Do you have trouble with your eyes?' to me and when I said yes, he said...'Well the meds can cause eye problems but it's rare'. I see no point in him mentioning it to me if there was no risk. There is a risk of death with most medications but it's so rare your not told, so why was this the first thing that he said to me....and so I have been left really no further forward than before I saw the doctor.
Sorry for this moan first thing in the morning!

Comment by PamW San Diego, CA, USA on November 22, 2012 at 7:13pm

The meds, clobestasol and plaquenil are to help with inflammation. Inflammation is what causes the follicle to let go of the hair and scar over (it is the body's way of protecting itself). The inflammation is what causes the pinkness and the itchiness. The docsnthink that the meds will help the symptoms of itchiness and pinkness, but the hair follicle stays under attack because of the toxic lipids that are present. My derm thinks the way to battle this is to keep the inflammation to a minimum. Dr. Vera Price (the US expert) says that some people will still lose their hair because they haven't turned off what is causing the toxic lipids.

I definitely would not encourage anyone to discontinue meds. I think you should fight this with everything that you can. I will try anything.

Comment by MairiM on November 22, 2012 at 4:29pm

I don't have his letter to hand but I think I'm right in saying it's
Salford Royal NHS Foundation Trust. My private appointment with a Dundee consultant cost £145 ( I wanted to bypass the long NHS waiting list in Aberdeen). I have to go back to see him on Monday 26 November, but now wondering if I will get anything more out of it - probably should have spent the money going to Manchester :-(

Comment by Liz on November 22, 2012 at 4:15pm

Where is Dr Harries based? The doctor I saw said FFA was his special interest but I dont believe him. I saw him in September and my next appointment is in June next year, so he will never know if the medication made any difference. I'm sure that Dr Hilary on Daybreak would be interested if I wrote to him. We must be interesting to someone :o)

Comment by MairiM on November 22, 2012 at 3:24pm

Liz, In my letter from Dr Harries he said that any GP could refer a patient to him, and that the waiting time would be about 6 weeks.
Celia, if what Pam says is correct about the 2common meds only treating the inflammation rather than the hair loss, perhaps I should stop using the meds?

Comment by MairiM on November 22, 2012 at 3:19pm

Would be great if someone can be brave enough to go on embarrassing bodies. Won't be me, though. At my age the less seen of my body the better!

Comment by Heidi Short UK on November 22, 2012 at 2:41pm

Hi everyone happy late Thanksgiving to our American friends!
Celia you say you are not sure of swallowing any medication, I just wanted you to know I have been taking my hydroxychloroquine sulphate 200mg since May with no problems what so ever, I take it with my breakfast and a multi vitamin! You have sounded a bit sad recently, keep your chin up, we all owe you a great deal by setting up this web site. Its a place we can come with questions and support. I hear the panic when people first join this group desperate for answers, confused, scared that all their hair is going to fall out! I know I was devestated I couldn't stop crying at first but now I am more excepting, I have tried everything and at the moment I'm ok ( I don't know how I'll feel next year when alot more will have gone!) I have got my hats for windy days, and I've got a few different hair bands if I'm desperate to keep my hair inplace.
There was one question that I would like you to ask Dr Harries 'has he had any luck in funding the data base for scarring alopicias, which he had talked about in his reply to me. I did reply to him by email but never had a reply back, perhaps I should have written instead.
Liz when i went to see my dermotologist the first time, my daughter came with me. It was one of the questions she asked him, he said FFA wasn't heredity, although other auto ammune diseases were. Also I went on the embaressing bodies website a few months ago and wrote on their wall regarding more info on FFA, I haven't had any reply though. Perhaps the more people who ask questions the more likely they would do a program on it! EVERYONE WRITE IN!!!!!

Comment by Liz on November 22, 2012 at 1:23pm

Hi. Is Dr Harries a private doctor? I cant understand why I was prescribed 8 weeks of antibiotics and 8 weeks of steriods when I have no irritation. I stopped both early (although safely!)Would you tell Dr Harris about the possible heredity factor because my mum has FFA to. My mum has no eyebrows. I on the other hand have lost half of 1 eyebrow! Im thinking seriously about contacting Channel 4 and asking to appear on Embaressing Illneses. Myabe I'd get some answers, and then again maybe not!
xx

Comment by Debs on November 22, 2012 at 6:52am

Hello All, Celia I am glad you are sorting out your brows, I will go along to this clinic in Chertsey when mine need a top up, had them done last November and they are still dark, have faded a little but it will be awhile before I need to touch them again. Went to a lovely Christmas fayre in London yesterday and had lunch. I wore a wig. My 2 girlfriends know about my FFA and saw me in a wig back in Sept. I wore a bob with a fringe, a Gisele Mayer, they both liked it. Nobody stared at me! A young woman working a a restaurant was wearing a very nice long wig herself, I knew because it was similar to a long wig I have purchased but my girlfriends had no idea she was in a wig and in fact my friend Sally commented on what lovely hair she had! Going to wear my wigs to several events in Dec to gain confiidence before going into them full time in Jan. Can't wait to hear Celia what Dr Harries says. Have a lovely week. Hope all the ladies in the USA had a fab thanksgiving. XX

Comment by MairiM on November 21, 2012 at 7:51pm

Rather belated Thanksgiving wishes to all of you celebrating today.
Celia - can you tell us where you found the new site that mentions Dr Harries?
Reading all your posts has been good for me as it makes me feel I am one of the more fortunate ones. I have no itching, flaking or redness, and I have lost only a small bit of one eyebrow. All I have is the loss of hair :-( and the characteristic pale skin. We have noted the variety of treatments we are getting, but I wonder if Dr Harries will have any ideas on why our symptoms vary so much also.

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