Rogaine users - did you get any new growth on the sides, where the hair is very thin but the scalp does not look inflamed? I'm finally seeing new growth but it's all on top. Naturally, I'll take what I can get but was hoping to see some new hair on the sides. 

Hi Jess.  My derm said the follicles were inflamed almost to the crown.  That was very hard to hear.  The itching has started on the top of my head too.  Alice i havent grown any hair on the sides.  I have some new growth on top but not where its scarred.  Its strange that i never had any inflammation on the sides or itching but the hair started falling out there first.  Has anyone ordered a wig or head cover from tlc?  

Debs - I've been following your eyebrow tattoos information with interest as I'm now thinking of having it done. (I find that penciling in my eyebrows every day and checking all the time to make sure they are OK is a real bore).  You seem to have had a great success with your tattoos but there's no way I can get to your lady in Chertsey so I guess I will have to look around Edinburgh and see if I can find somebody good up here.  How long did your tattoos last?  Did it hurt and do you know if there is any qualifications that I should look for in a semi-permanent cosmetic tattooist?   I'd be really grateful for any info.

Hi Everyone,

I was looking on line at the lace hairpieces for sideburns and wondered if this (cut to fit)  would be a solution for areas around the face where the hairline has receded. I am also wondering if anyone has tried any small hairpiece attachment and was satisfied. 

Warm regards,

Jen.

Hi Jules,

Thank you for your reply.  Would I be presumptuous to ask if you can post pictures of the 2 hairpieces before you attach them? I am thinking that pictures after you attach them is too much to ask.  It would be a really good thing if we can figure out a solution to the hairline so we can feel normal again.  For now, I may just need to work on the edges with small hairpieces and clever hairstyling. I am not ready for a wig.

My FFA has absolutely no symptoms. No itch or pain or inflammation. I just lose the hair in the shower.  Sometimes  I may see 4 or so baby hairs on my desk which look like the ones on my hairline. 

Jen. I have a hair piece which I bought from Trendco for about £50. It clips in and covers where my hair has gone. I love it! I can forget I have it in. It blends in with my hair. My son said to his friend last week 'Look at my mums new wig' and his friend said 'what wig'. It does exactly what I need it to do. x

Hi MJ, It is a relief that I do not suffer from the symptoms but at the same time I cannot tell when I need to see the doctor.

Liz, Are the clips hard on your hairline?   Does your piece look like bangs or some other types. I live in Canada and will go to the hairpiece shops here. I purchased some fake bangs at the mall but they did not match so I believe that I need something better.

Liz,

I just checked the Trendco site and saw Vesta. Is this the one you use?  It looks like it would do the job.  I will see if I can get something like that here. thanks so much.

Hi Jen, the hairpieces I've ordered are fixed with wig tape but it's similar to a wound dressing apparently, allowing the skin to breathe so the hairpiece can stay in place for prolonged periods.

Thank you Jules,

Wonderful feed back.  I suppose you can shower with them for a few days.

Well, Pam keeps hers on all the time in between hair appts, so about 6 weeks.  Sounds wonderful!  I hope she doesn't mind me talking about her like this! :)

The information provided is really helpful to me. I am very grateful. It is important that I find a solution so that I can move forward confidently without having to worry about the wind or any other adverse condition. The steroid injections do not help and I am afraid of any medication.  I hope that others on this site find this useful.  Thanks to both you and Pam. 

Jen - I have had 3 rounds of steroid injections.  Could not notice any benefit - but 1 year on I am left with a concave ridge across my (current !) hairline and vertical veins showing across my forehead from the hairline each about an inch or so - not very pretty !  I would never have them again.

Jules - so glad you are getting your hairpieces organised - look forward to hearing that it all goes well.  Were you able to get the NHS contribution towards them ? If you did - how did you do it ?

Liz - that's great that you have found something to offset the awful feelings that surround this condition.  Well done ! I haven't got there yet.  I have asked Dr Harries if he can recommend a derm a bit closer to home and so I'm waiting for his response.

Debs - my appt with Belinda is June 26th at 1pm.  She is fully booked until then !

Jules - I thought the GP initiated this at the request of the patient.  If Dr H gave this then the money would presumably come out if Salford's NHS budget whereas if your GP provides the paperwork then your local health authority would comply. Whatever is given can be spent against whatever you wish, I think it is like a voucher.   I thought so and I'm almost certain Pam was able to have this. Have you asked your GP.  I understand that as an alopecian (awful isn't it !) you have an entitlement to 'wig money'. x

I got an NHS prescription toward a wig/hairpiece from my local doctor. I can be used at named suppliers.

Thanks Pam for that info - I hope, Jules that you can obtain this and use it retrospectively. x

Jen. Yes it's the Vesta hairpiece. My wig voucher covers £130.00 towards the cost of a wig, twice a year. If you get one of these, Income support, Tax credits, Job Seekers, ESA, Pension Credit or you have a partial or full help certificate you get the full £130.00. xx

Anne, I am SO sorry about your group miss.  I know just how frustrating and disappointing that can be.  I wondered about a meeting on a Sunday afternoon -- is it possible somebody just gave you the wrong date?  Well, as they say, keep your chin up -- and in your case you seem to have got that conquered!  I love your upside down photo -- just makes you head and shoulders above the rest of us.  Keep the faith,

Classical Anne

Oh lovely upside down Anne ! That is tooooooooooooo bad ! And you have gathered so much info that you might have been able to share - you must feel so fed up ! Things can only get better and I am sure I speak for the group in that you have added so much to our forum over recent times.  Don't give up or go and eat a bar of chocolate or other things that are apparently bad for us.  So sorry.

Your eyebrow tattooing is something now to focus on I hope.  I am having mine touched up/renovated (!) in June - had hoped for earlier - nearly 18 months after the initial procedure.  You will be so pleased that it will put recent events out of your mind.  X

Anne, sorry about your experience with the support group!  So disappointing.  Good luckw with your eyebrow tattoos, I'm sure you will be really pleased!

Anne - I'm so sorry you had a wasted journey and felt so fed up.  What a drag for you.    Please will you let me know how the eyebrow tattooing goes?  I'm thinking about it but have yet to find anyone good near where I live. 

Oh ..... and I love your upside down photo. Always makes me giggle.

Anne Louise, I have had similar experiences with my doctor when I bring up different approaches to treating ffa.  I saw three derms before I found one aggressive enough to even put me on plaquenil.  (The first two recommended a topical & follow-up visit in 3-4 months.)  I love my current doctor, but he is skeptical when I mention something new I've researched on the internet.  He's always willing to let me try something that won't harm me, but quickly dismisses something that he thinks might do more harm than good.  I think most doctors want to prescribe tried & true treatments.  Unfortunately, there aren't a lot of those available in regards to ffa.    Good luck on your eyebrow tattoos!

Anne L, thank you so much for all the research you've been doing, filtered through your own training and experience in nursing.  I think that validates your efforts, where others of us might be ignored.  I whole-heartedly support your proposition to synthesize and summarize your findings, with a goal toward sharing with our dermatologists.  It's hard to imagine getting much done with your 7, 6, and 4 year olds, but you seem to have the energy, and clearly have the motivation and enthusiasm -- for which I think all of us are grateful.  You go, girl!

P.S. I will miss your chin-up photo, but it's always nice to get flowers, even electronically.

Many thanks & best wishes,

Anne S

Anne L , thanks for the dermy update.  I laughed when you described your blabbering and mumbling !!!!! I have tended to do that in the past when there is so much I want to say and even though I have notes I rarely seem to get across what I want to say - until I have left the room it often is a bit of a blur.  Silly really when I think of the many meetings I have chaired in the past in my role in school and I could take notes as well as speak, then write it all up afterwards - no prob ! I feel that was a lifetime ago since then.  I made a second phone call 2 days ago to the derm I saw recently, asking for the notes from my appt with him in Feb - I last phoned 10 days ago and was promised by The Secretary that she would e mail my blood results and send the letter from the derm.  It wasn't until the second call that there was action ! I received not only 1 letter but 2, one dated Feb to the GP saying I was low on zinc and a second to the GP about my condition........this seems to happen so regularly, having to ask again and again for what I would expect to happen, having signed a form there to say yes to all correspondence being copied to me.  Moan moan, sorry ladies ! It promises to be a nice day here so I shall get out and enjoy it ! x

Hi all, I just wanted to share that after 10 months of taking Plaquenil and using a topical on my hairline, I'm starting to see a noticeable difference in my hair loss. It has taken a long time, but I can definitely see a difference.  I used to find about 30 hairs on my bathroom counter when I dried my hair, but that number has gradually decreased to 10-12.  I know the ffa is still active, but I feel much more hopeful.   

Annie, what topical are you using?

 April, I'm currently using Bethamethasone Dipropionate 5% topical.  I used Clobetesol for two months.  I think it helped with the inflammation, but it was extremely irritating to my scalp, so my doctor switched to the Bethamethasone.  It's a little oilier (plus more expensive), & not quite as irritating.  I definitely think that using a topical makes a big difference for me.  I saw my doctor for my one-month check-up after starting Plaquenil and mentioned that the Clobetesol irritated my scalp.  He said I didn't need to use  a topical since I had very little redness & inflammation.  When I saw him three months later, the ffa was much, much worse.  That's when he gave me a prescription for Bethamethasone.   

C,

Hello everyone, I have been off line for a while thanks to a boy racer who decided to take out the telegraph pole up the road and leave us all without the internet...bless him. The joys of living in a Suffolk village.

I noticed C that you said your results had come back with low Zinc. I had that as well, in fact I can remember telling the ladies when we all met up about my trip to see Dr Chris at Guy’s and the blood tests he did that came back with low iron, Zinc and B12. They were taken back in February. When I got the results, I made an appointment to see my doctor but he was away so had to wait 4 weeks. When I did see him he insisted that I have the tests run again at my local hospital. Made another appointment to see doctor to discuss results and had to wait another 3 weeks. I was ready for a fight when I went in but finally on Tuesday he agreed that I need iron, zinc and B12 (had first B12 shot yesterday) but as I cannot absorb vitamins and minerals in my gut he is also sending me back to Guy’s to see a gut specialist. Phew!

Hope all are keeping chin’s up. 

meme

Meme - welcome back.  These lengthy waits are too much sometimes.  I have had problems asking questions and then having to ring back and again and so on and just being fobbed off.  It's called being inefficient I think.

Anyway - glad your internet is back - what did we do without it for so many years ?

x

Hi Curlytop!  Sorry about your FFA diagnosis but welcome to the group.

I was out at an event yesterday (an auction actually!) and noticed TWO women in the crowd with noticeable FFA.

I know that my sensors are out to recognise it, but it does make me wonder if it is getting more common. Do other people see it too?

(I should be paying attention to the auction prices, but can`t help looking at hair conditions!)

Hi Pam,

I do the same thing. I am obsessed with looking at hairlines. I see so many women with high hairlines that  I wonder if they realize that they may have FFA. Are you still happy with the small hairpieces?

I know what you mean. I am constantly looking at womans hairlines. I have been tempted sometimes to approach them for a chat but have never had the courage. I went for nearly 10 years without knowing what my condition was so maybe they are in the same situation.