Comment

Comment by Jules UK on November 13, 2012 at 2:51pm

Hi all. Can anyone say how quickly hair recedes at the front once it gets started? I suspect it's different for everyone, but does it disappear maybe an inch or so and then stop for a while or will it keep going? Mine is thinning alarmingly at the moment. Worried there won't be too much for dr harries to see..... And can you buy a hairpiece over the counter to tide you over until a custom made one is ready? I've got some research to do! Debs, your hairpiece looks fantastic!

Comment by Heidi Short UK on November 13, 2012 at 12:18pm

Mairi, I have lost most of my arm and leg hair, I haven't needed to wax my legs since last xmas( FFA has some benifits!)
Liz you can pull the hair out easily as the hair follicle is damaged, I can do the same to the odd eye brow hair that I've got left. They grow in a weird way, different directions and some not even on my brow!
Debs I've been on anti malarial tablets (Quinoric 'hydroxychloroquine Sulphate')since May. I've had no problems with taking it and I'm on it until Febuary when I next see the derm!

Comment by Debs on November 13, 2012 at 2:16am

Celia, I have asked questions on a couple of other alopecia websites about plaquenil (anti-malarial drug). 2 ladies in the USA have said that they used anti-malarials and it did help the hairloss. Can you please run this past Dr Harries, also 1 lady said she used Vitamin H - Biotin - this was presecribed by her derm. Ta v much.

Comment by Debs on November 13, 2012 at 1:22am

Hi Ladies, I have lost the hair on my arms and legs, it happened very quickly and to be honest I didn't really notice it until I saw the loss of head hair last December. Celia, the tattoo lady knows what you want.. a natural looking eyebrow, she is used to treating people with alopecia. You have a consultation when the do the treatment and they discuss at length the shape/colour etc you want. I bought some St Johns Wort about 10 days ago, I feel very anxious and wanted to try a natural route to help myself. I do find I wake up in the mornings and for a few seconds think I have just had a nightmare where I have imagined I am losing my hair... then reality dawns on me that it is real. I think this is the most difficult thing I have ever had to deal with in my life because it is happening in slow motion, other upsetting events have tended to be quick, like bereavements, whereas this FFA is very very drawn out. The lady I made contact with that I mentioned in my previous post (that was diagnosed in 2006) has used just about every treatment going and she unfortunately has had continued hair loss. I found a nice website yesterday in the USA, www.coveryourhead.com. I have ordered 5 nice wide headbands, I have headbands that are 3.5 inches but my front hairline had receeded pretty quicky in the last 3 months so I wanted to make sure I have even wider headbands at home to wear to the gym in case it all speeds up even more. I have a horror of being caught out and not having anything to cover my hairline with. I too am really interested to see what Dr Harries can tell the Celia, if he offers any other treatments we can all have a go at it. Have a good day ladies, I am making sure I still go to the gym to try and work off some of this angst. XXX

Comment by Liz on November 12, 2012 at 5:13pm

Can anyone else just pull thier hair out at the front? The doctor pulled a handfull out when I saw him and I didnt feel it. I guess thats how he assessed with the condition is active. I try to leave it well alone but this morning I had a little pull just to see and I can pull it out as easy as anything. Just from the front. The back and side behind my ears are stuck fast!

Comment by Jules UK on November 12, 2012 at 5:08pm

I haven!t lost hair on arms or legs, just underarms which was a gradual loss. Mairi mentioned a link with sebaceous problems. I've had lots of sebaceous cysts removed over the years when they've become infected (sorry, not pleasant subject). Dr said I was prone to them. Might this be linked with FFA? Anyone else had similar? Off to bed now. Hopefully a good night's sleep!

Comment by MairiM on November 12, 2012 at 5:01pm

Jules - yes I was trying the 5:2 fasting diet. I have not done it for the last two weeks as I've had a really bad cold and haven't felt up for it. I did see it being recommended in a newspaper, with the proviso that we should eat a healthy 2000 calories on the non-fasting days. I do really like it. I do put on weight very easily and find it easier to fast two days rather than be constantly watching what I eat. Who knows if it affects the FFA? Website is playing up again - can't see any 'Reply' boxes :-(

Comment by MairiM on November 12, 2012 at 4:55pm

I have virtually no hair on my arms and legs. I think this went pretty quickly - not a gradual retreat like the hair on my head. Does anyone else agree? If so, it would be interesting to know Dr Harries thoughts about this.

Comment by MairiM on November 12, 2012 at 4:52pm

Some dogs, especially poodles, get a disease called sebaceous adenitis(SA) in which the sebaceous glands become inflamed, leading to progressive loss of hair and scaly skin. Some websites say that the hair grows back after treatment - dogs are more fortunate than us humans!

Comment by Jules UK on November 12, 2012 at 4:45pm

Thanks everyone. Heidi, I'm in Birmingham so a virtual hug will have to do, but it's no less welcome for that! I'm not quite wallowing in a corner, weeping, but sometimes it becomes overwhelming, especially when applying the steroids because then I'm forced to confront it. I went to an alopecia uk coffee morning on Saturday and met kath, a fellow sufferer. She's further on than me, wearing a custom made hairpiece which was very good. I've asked her to join us but haven't seen her here yet.
I've seen diets mentioned. Is anyone else trying the 5:2 fasting diet? I've been on it for about 4 weeks. It's getting easier but not helping the FFA that I can tell.

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