Hi all, I've been using 5% Rogaine since early April. My shedding doubled from week 2 thru week 4, then I went back to my normal FFA shed. It's true that you won't grow hair on the scarred areas, but some of the fine baby hairs around my face has grown back, which helps to cover the bare spots. My hairdresser noticed new hairs sprouting about two weeks after I started using Rogaine. I now have new hairs ranging from about 1/2 - 2 inches all over my head. Regarding irritation, my scalp was itchy & tender for about a month when I first started using Rogaine, but I slowly adjusted to it.

Hi Ladies, have just got back from a fab holiday in France. So been away from the site for a week. Liz, yes... I also have the old fashioned fillings in my teeth. I had my molars filled as a child due to the side effects of me taking tetracycline antibiotics as a baby for pnemonia... funnily that is the same drug we are being given for our FFA (it only effects babies future teeth not us as adults)...

Very hot on holiday. Used a synthetic wig (with open wefts) Jon Renau brand and also a couple of nice silk scarves... I was very comfortable in both options and the heat was not a problem.

I saw an article in the Daily Mail about EYELASH TRANSPLANTS... It is an expensive option but one that might be worth having a go when your FFA has stabilised. The article says surgeon Asim Shahmalak at the Crown Clinic in Manchester performs this procedure. I assume there must be other doctors that do it too. The procedure was invented in the USA apparantly.

Plus... I saw a couple of ladies on holiday with FFA. I mentioned it to my friends and they agreed that the hair loss was like mine. This is the first time I have noticed other FFA sufferers and had a friend with me to confirm I am not just being paranoid. I really feel this is not a rare condition just under-diagnosed.

STEROID INJECTIONS... can anyone tell me please... if you had steroid injections and it left you with dents in your head how long did it take before the dents went away? or do you still have the dents and they stay forever??? This may be my next treatment option and I can't find anyone on any alopecia site that has used these injections and not ended up with dents in their foreheads....

Carol, thanks for the info. I will check out this supplement, sounds like it has a bit of everything we need in it.

Hi Debs. I have indentations along the area where I have lost my hair which were not there before I had this condition but were not caused my the steroid injections either. Where I had the steroid injections there are no further indentations but in the last 2 weeks I've lost more hair in that area.
I'm feeling a bit crap today about this condition. Usually I'm ok but I'm now at the stage where wearing nothing is not an option. I don't mind wearing a scarf. I talked to Trendco about not wearing a wig cap and they advised that I should or my wig might not be secure :o( Anyway. Any links to websites selling scarfs would be cool :o) xx

For those of you using Rogaine, what is the dosing? My derm said she reccommended staring out just 2 or 3 times week, but I failed to ask why. I'm wondering if starting slow makes a difference with shedding or irritation. I almost bought some at Costco yesterday but chickened out after reading the precautions on the box.

I also have received injections - twice in a space about a year apart. Both times I got dents where the injections were placed, and both times they eventually went away. I also think they helped and would do it again if my hair loss increased again. Right now I am not losing any hair and have grown my eyebrows back. I am continuing to faithfully use all my lotions, potions and medication in the hopes of keeping things as they are now.

Alice, my doctor gave me completely different advice regarding Rogaine. He said to use the foam morning & night for the first 6 weeks, then once a day after that. He also said that if I chose liquid Rogaine to use it twice daily even after the first 6 weeks.

I agree with Carol. Using Rogaine has really helped by my hairline and my eyebrows. I would also like to add that using Rogaine along with Rapidlash has caused my eyebrows to fill in completely. While they aren't as thick as they once were, I now have hair all the way across. I even feel comfortable not wearing makeup on them, which a month ago, I would have never done. Feeling so much better about them.

I have a question for those who have been on Plaquenil for a while. Did you continue to have flare-ups while taking it? I started taking it June 22. My doctor said it would take a couple months for it to affect the shedding. I felt like things were going fine until about a week ago when I started shedding a little heavier, and now my scalp is as tender as before I started taking the Plaquenil. Should I gradually get better, or will I continue to have setbacks while taking meds? I don't have another appointment with my doctor for another month.

I had a setback about a year after taking plaquenil when everything was going fine for a long time. I believe it was because of stress in my life - my mother-in-law became ill, was diagnosed with cancer and died all in a span of about 10 days during this time. Afterwards, I started shedding again. It was a total relapse with itching and everything that went on for a while 3-6 mos. I also have to admit that I had been feeling so good for so long that I was not always remembering to take my medicines regularly.

When I went to my doctor, we started all over again with my meds: plaquenil, back on doxycycline, steroid creams, and steroid shots. I added protopic, and I also began Rogaine in earnest. Finally, I began taking tumeric after reading about it on here.

Well, it took a few months, but now I am back on track and am no longer on antibiotics. I am still taking everything else. My regrowth of eyebrows has been astonishing to me as well as the fine hairs around my hairline that have recently started growing. I thought they were gone forever. I'm also trying not to get too attached since we all know things could change rapidly.

From this relapse, I have learned a couple of important lessons:
1) Don't get lazy with my regimen of medication and lotions.
2) Try not to stress! I do this by exercising daily and taking time for me each day.

Hi ladies, thanks v much for sharing your experiences of the steroid injections.

Liz, your wig will be secure without a wig cap, it is the perimeter of the wig that secures it so the wig cap is really not necessary. I never wear one and was advised not to by the wig salon I use, they also make wigs for the film and theatre industry so are very experienced. I get my scarves mostly from Acessorize the high street shop. Costs vary between £12 to £15 for silk.

Christiekd, thanks for the information regarding your flare-up. I also lost a family member in August and wondered if that might affect my progress. My scalp feels better this morning.
Sam, I was also nervous about shedding eyebrows with Rogaine, but decided to try it anyway. I did shed a few, but they were quickly replaced. Within a month my eyebrows were thicker than they had been in years. I should mention that my eyebrows have not been affected by the FFA yet. I've never been blessed with thick eyebrows, and they have thinned over the years. You can find instructions online that tell how you should use Rogaine on eyebrows.

Has anyone been advised to try stick on hair pieces? I saw a guy this week who works in a wig salon, and he recommended I try a natural hair strip that would stick along the front of my hairline where my natural hair has receded. He said he could match the colour, and it would be attached by a sticky tape which could stay on for weeks on end. I am a bit concerned that it could strip off any of my residual hair left underneath unless it is really in the right place. Has anyone tried using this system?

Hi Jules - Dr Harries suggested I use Regaine as well as steroid and Plaquenil. Your hair do sounds good ! X

Thanks for the feedback. If anyone has tried using the stick on hairpieces do let me know. Your hairstyle sounds good Jules, and will hopefully mask the condition for some time. I have been carefully having my hair cut for several years, but it is now that it is hard to hide it, and I have started looking at wigs and hairpieces. I bought a nice wig from trendco, but so far have been too scared to wear it out!! I thought that maybe a front hairpiece would look less obvious. But the thought of having sticky tape on for weeks or days does seem rather nasty, so that`s why i wondered if anyone else had tried them?

I went to see my dermatologist this week and he has referred me to Dr Harries. My derm didn`t know about Dr Harries until I told him about his research interests, so it is only due to this group that this knowledge is getting spread around - so thanks everyone!

Hi Ladies, I have just posted 2 photos of me in one of my wigs on our forum under the 'wearing wigs/hair pieces' thread. I decided to pop them on to try and help anyone that is worried about what a wig actually looks like on a real life person. The first photo is of me in very close-up wearing a wig (plus tattoed eyebrows and eyeliner) the second photo is me in a group of girlfriends - none of them are wearing wigs so you can 'contrast and compare' my wig with their natural hair and you can see there is no discernable difference. I hope if anyone thinking of trying supplemental hair this will help you in some small way. XXXX

Hi Debs - you look great in your wigs and you're right; nobody could think that you're wearing supplemental hair.
I too wear a lace front hairpiece and can honestly say that it looks as if it's my own hairline. (If I get brave I might post a photo of myself in it - but I'm a good deal older than you are and the camera isn't really my friend nowadays!)
I'd say to anyone thinking of getting a wig to go to a good wig shop, get professional advice and just give it a try.
Your eyebrow tattoos and the eyeliner are very successful too.

Yes, I just need the confidence to take the plunge! Kath, how do you attach your hairpiece? Is it a front hairpiece or a full wig? Have you tried the stick on method?

Hi Pam - My hairpiece is like a little cap and mixes in with my own hair at the back and sides. It has three patches at the front (one in the middle of my forehead and one each side) which I use wig tape on and there are three little clips at the back which clip into my own hair. It's very secure and comfortable to wear once you get used to the idea. My own hair is cut in a short bob with a fringe which I brush back when I put on the hairpiece and which I can still brush forward so I can wear a headband or scarf if I want a rest from the hairpiece.
My hairpiece is from the Ellen Wille 'Hair Society' acrylic range and the piece is called 'Close'. My own hair is sort of mouse with some grey and some highlights and the hairpiece really matches in very well at the back and sides.
Don't be scared to give your wig a go - even just around the house. Think of it as a new beauty aid! Good luck with it. Hope this helps.

Hi Jules - No I don't sleep in my hairpiece. The clips at the back would make it uncomfortable and I'm not sure if acrylic hair would stand up to being rubbed on a pillow all night. I believe there are wigs you can sleep in though. Maybe if you ask wigsupport they could advise you.

UK ladies - please check your mail - I am trying to get us together again for lunch and to solve this problem we have - it will only take us a couple of hours................
Suggesting these dates

2,3,4, 9.10.11 October - if you let me know which of these dates you are free then I will try to make a plan to accommodate all. Looking forward to seeing you again ! x

Hi all,Its hard to keep track of details I know I've read along the way but those ladies that have purchased wigs,what brands did you feel were of very good quality or do they all have high & low end quality.Thanks.

Rita, I also use the wigsupport website for all of my wig info. You do need to buy name brand wigs, the ones that Carol has listed, there are some very cheap wigs on the market but I think if a wig costs the same as a pizza it will probably only last as long!... You don't need to spend a fortune on a wig for it to look natural. My preference is synthetics because they bizarrely look less 'wiggy' than human hair wigs. They are not too thick and you don't have to style them. Mine cost Ignite, Jon Renau brand £99 - Julia, Jon Renau brand £145, Stream, Ellen Wille brand £120 - Techno Cut, Gisela mayer brand £140, I have a human hair wig from Raquel Welch that was about £500 that I never wear because it is so difficult to style.

If you want to check out a good range of wigs look at

www.voguewigs.com
www.wigs.com

these online wig stores are in the USA and carry a huge line of wigs. NOTE you don't have to purchase from these sites as you may well find the same wigs cheaper somewhere else, I just suggest looking at the sites to see just how many lovely wigs are on the market.

Carol & Debs, Thank you so much, I will do my research with all your info, have printed it out to carry w/me.

Hi Celia would love to meet up and I'm free all those dates except the 2nd of October. I have already met up with Julie and Terry at the Trafford Centre on the days of appointments with Dr H and it was very good to talk and discuss medications! Sammi x

Thank you Sammi for your response. Will keep posting as I get replies then I will post my e mail here so you can contact me to give directions - don't want to post directions on the forum ! x

Thank you Kath for passing on information about your hairpiece - I am very grateful.

Hello - regarding our get together....my suggested dates were - 2,3,4,9,10,11th October - so far :-

Julie 3,9,10
Sammi 3,4,9,10
Paula 9, but best for her are Fridays - ie 4,11th
Polly 2,4,9
So at the moment the best date looks to be the 9th unless anyone has a better idea ? I hope that we can make this work. I don't know how to contact Heidi as she doesn't log on very often but hope to hear from Liz and Debs.
Best wishes !

Hope also to hear from Caro ! Trying not to get in a muddle with this ! x

Hello Celia, thanks very much for organising us UK ladies again. I can do the 9th Oct the other dates are OK for me too.

I could do Oct 2nd, 3rd, and possibly the following week too, but will let you decide a date and then see if I can make arrangements to join you.

Hello Celia. Thanks so much for the invitiation. Yes the 9th October is good for me as well. In fact it's perfect as I am not working that week! Really looking forward to seeing everyone again.

Thank you for messages re our get together. My e mail address is celiareeve@hotsmail.com for those of you needing directions. If you e mail me then I will send info, rather than here. Hope that's OK. So - the 9th October is the date and I hope that Paula can make that one ! So we are Julie, Sammi, Paula, Polly, Caroline, Pam, Debs and hopefully Heidi if she gets a message. Have a good rest of the weekend ! x

I have had an e mail from mobrsb - I haven't opened it - was not sure if it is from one of you or a spoof....if anyone emails me please refer to the get together in the title then I will know it is safe to open it - thanks !

Hi Terry, thank you very much for your info. I have never had much hair on my arms of legs, I have never needed to get my legs waxed for instance and use to just shave them once a week to keep them completely smooth. My eyebrows just fell out about 3 years ago - that said, I do have some eyebrow hair just not enough to look groomed.

At my age, 50 years, I have found that in the past 2 years I have only been menstruating about once every 6 months. However since July I have found I am back to menstruating once a month!!! There are 2 possible causes; I started juicing back in July and using Dr Weil's anti-inflammatory diet, I started plaquenil in March. I have also found that the skin on my body (arms/legs) is not dry any more and my hands look 'younger'. I think my improved diet is most likely the reason but maybe some other ladies have these symptoms that are using plaquenil.... whatever the cause I am quite happy with it. XXXX

Hi Terry - are you close to London and if so perhaps able to join us for a get together on 9th October. e mail celiareeve@hotmail.com for directions if you think this might be possible. Best wishes !

I would love to be able to meet up with someone, anyone who has FFA. I'm on such a bundle of medication just now and feeling quite isolated. But I don't suppose there is anyone up here in the wilds of the Scottish Highlands. I hope you all have a productive and supportive get- together. Please post anything interesting that is shared. xxxx