Comment

Comment by Jules UK on November 23, 2012 at 5:56am

Has there been any evidence about the flu vaccine having an effect on FFA at all? Just wondered, since it's been mentioned a couple of times.

Comment by Jules UK on November 23, 2012 at 5:54am

Hi all. I've been thinking along the same lines about giving FFA a higher profile - perhaps writing to Good Housekeeping magazine (my mum subscribes). They run alot of articles about breast cancer - well this is also a female disease so should be pertinent to their audience. I've switched to Dermovate but the redness is not lessening and my hairline is very ragged. It really is horrible. I'm going to meditation classes but am finding it impossible to switch off the "monkey mind". Not sleeping much either. Has anyone else tried any relaxation techniques that have worked for them? It's only been about 5 weeks since diagnosis but feels like a lifetime. It's so reassuring to see all your comments, especially how devastated you feel since friends and family really can't see how frightening it is. Only last night, an old friend commented that she'd rather go grey than bald, "oops, sorry Jules!". I ask you........ Celia, when you swim, do you wear a swimming cap?

Comment by Liz on November 23, 2012 at 5:47am

Hi celia. Thanks for the advice. I shall look in to getting a refferal to Dr Harries. I'm planning on going to my local Alopecia meeting in a couple of weeks so may meet someone else with the condition. Enjoy your gym session :o)
x

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!!!!!

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