Comment

Comment by Debs on November 23, 2012 at 11:27am

Hi everyone, I am going to an alopecia uk support group on 3rd Dec. I need to be with people that have hair loss. Liz, I hope you find your support group meeting helpful. I can't keep going on about it to friends because they don't understand. I sometimes feel like I am going to crack up and am using exercise at the gym to try and relax a bit bit it is on my mind constantly. Celia thanks so much for keeping us all in the picture about Dr Harries. When I hear how you get on I will see about may be getting to see him or at least trying to get the same drugs as he prescribes for you. I hope you ladies have a good weekend. Xxx

Comment by Liz on November 23, 2012 at 7:18am

Maybe Dr Harries would like to see me and my mum as we both have it. So it's a rare condition ( I have it), even rarer in pre menopausal women ( I'm pre-menopausal) and not hereditry (my mum has it...Maybe I should feel 'Special' lol :o)
I wonder if there is a link between FFA and the hormones that are pumped in to animal products. Im a vegararian but I drink a lot of milk and I've read some awful stuff about the hormones in milk.

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?

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