SAMMI - as you have been seeing Dr Harries for 2 years you are well ahead of the rest of us in the UK that having only been seeing him for a few months... Can I please ask you to post what treatment you have received ? and any side effects and whether it worked ? Any info we share with each other really helps us to make informed decisions about what we are prepared to try. Thanks you.

Hi everyone, Ive been keeping up to date with recent posts. All very informative. Glad to say I have not had any stomach irritation since I changed from the generic hydroxychloroquine to Planquenil.
Hi Ellen, interesting that you have Rosacea and eczema, both of which I suffer from. I also have Vitiligo.
I can't style my hair properly any more so I've bought a wig and I had it cut yesterday. Then I wore it to the shops. I was very nervous and kept checking myself whenever I came across a mirror! No-one gave me any funny looks so I guess it looked OK. It was very windy out and I was really worried it would blow off! Managed to get back to the car without misshap! Fed up with spending ages trying to pencil in my eyebrows to make them look natural. As luck would have it, there is someone local to me who is an expert in semi-permanent makeup so I'm going to take the plunge and have eyebrow micropigmentation. I've booked an appointment for next week.

Pam, thank you very much for all your information. My dermatologist says she will prescribe plaquenil for me when I next see her so I am glad to hear as much as possible about other people's experience of taking this medication. I intend to ask my dermatologist how many people she has prescribed plaquenil for FFA and what the success rate has been. Good luck with your treatment!
Caro, it was good to hear about your first experience as a wig wearer. I'm getting my first wig next week and I feel a bit apprehensive. I was worried about the possibility of it blowing off on a windy day but you said yours stayed on ok. It does feel like finally accepting that I need to wear a wig is a big step but what you experienced seems reassuring. Thanks for sharing. I bet you felt nervous stepping out to the shops wearing one for the first time. I'm sure nobody noticed and you looked great, though. Did you wear a full wig or a hair piece? How comfortable was it?

That's really useful info Debs. Thanks! Will check out both sites.
Kath, good luck with your new wig. Mine is a lace front and synthetic so it's lighter than human hair. Even so, before it was cut it was too thick and felt heavy on my head. Probably because my own hair is so fine and thin it felt strange, like wearing a hat. Since it's been properly cut it feels a lot lighter and more comfortable. Re the chance of it blowing off in the wind (!) the stylist said I could have a clip sewn into the lining near the base to clip to my own hair at the back which would help me feel more secure when wearing it. She showed me what the clip looked like and where it would be attached. My hair has not been affected at the back of my head. Anyway, for now I've decided to try wearing it without having the clip and see how I get on. I went for synthetic hair because the colour will not fade when washed. It is a pretty good match for my own hairt, which is coloured anyway. Mine wig also be heat styled on a low heat, though I haven't tried that yet.
Really exited about having my eyebrows done (by Noveau Contour). Have to do a patch test first to make sure I have no reaction to the dyes used. I'm going to go for the hairstroke brows as I want a natural look and I have very fair skin so I don't want anything too dark which will not suit me.

I have been going to the University of Colorado for my FFA. First they put me on Minocycline and Griseofulvin for six weeks. The only symptoms I had were hair shedding, no inflammation, no itching, no burning. The only thing is Griseofulvin is hard on the liver. I decided I did not want to take it and have the chance my liver gets damaged. All my problems started after prescription drugs anyway. Last visit to the doc they started me on Spironolactone and Avodart (?) like Propecia. He said a recent study at Duke University used this regimen with good results. My question to all of you is can you see your hair follicles in the hair loss area? I can't see how taking these meds can regrow hair if there are no follicles, which I don't have. I hate taking prescription meds, I have had 6 different diagnoses since this all started, so I don't know who to believe any more. I will let you know if I start the new meds and if they work. I feel great and I hate to have any side effects. Do you all have scalp symptoms like itching and burning? I did for about three months, then I took doxycycline for about 3 months and it all went away.

Hi. Does anyone know if perming or dyeing hair makes any difference to the hair loss? I ask becuse I was thinking that I might just do something a bit funky with the hair I have whilst I still can so I think I might perm it and dye bits of it. I have no irritation which is good.
Celia, thanks for you email. How do i access it on this site so that I can reply?
xx

Debs, thanks for the 'wig support' website info. That was a great help and I'll look that site up now. Getting my first wig next week (if it is ready) so I appreciate any hints and tips.
Caro, thanks for your info. too. Like you, I'm getting a synthetic wig (I was told that I had a limited choice on the NHS - which is fair enough. I'm happy that I'm being given a free wig!). I don't know how things work in your NHS area but it seems I can't use my wig allocation as part of the payment for a more expensive wig. The one I've chosen seems OK and I'm going to give it a try and see how it looks and feels to wear. If I'm not happy with it then I will pay for a more expensive one myself.

Pam I'll change my profile photo once I've had my eyebrows done, and be sure to be wearing the wig as well! There is a new me on the way! I tell myself to think possitively. My hair is progressively getting thinner and hairline still receeding but when I put on my wig, I see the old me looking back - well not so old, in fact I look years younger so that has to be good!
I've been looking at Patti's Pearls site - great advice on there, especially about how to make sure a wig stays secure using double sided tape. Thanks Debs.
Michelle, So sorry about your hair loss. In answer to your question I have no follicles visible in the areas where my hair has been lost. They have scarred over. I have about an inch of completely smooth white skin where my hairline originally was. The LLP is still very much active and my hair follicles are inflammed at the hairline and about an inch back from it at the front of my head. I'm taking Planquenil but realistically I don't expect to see any improvement in my condition for many months and maybe not at all. I've been prescribed Dermovate scalp lotion to use for the inflammation. I have never had any scalp irritation or burning like some other people have described.
Liz, personally I would advise against perming because of the chemicals used in the process but hair colouring is fine as long as ammonia is not used. My derm told me I could carry on having my hair coloured.
Enjoy the rest of the weekend everyone - the sun is out here in the UK for a change!

Caro, I'm having my eyebrows done next week and I am soo excited. The thought of not having to put them on every morning will be so nice, not to mention going camping and stuff like that. I know what you mean when I put my wig on, it takes years off. My son said I looked 35 when I wore my red one. My hair is usually brown and when I wear the red one that is very similar to my style, everyone says I love your hair color. I'm thankful there are cute wigs out there! I love the fact that they are all highlighted now, you just can't tell they are wigs. I get more compliments when I have my wigs on than I did with my bio hair.

I have resigned to the fact that nothing is going to help my hair grow back, except by the grace of God! I've just got to move on from going from doc to doc. I'm at peace with it actually. I'm not losing my hair because of chemo or anything. I'm not going to take Rx that might injure my organs. I have read many times that your body will take care of LP on its own, in due time. Might take years though. Peace to all!

Ellen, no I have not taken accutane. I have not taken any medication at all apart from antibiotics a couple of times for childhood illnesses and I have used the contraceptive pill a few times in my life but not more overall than about 5 years in total. I don't think my FFA is related to any medication I have taken.

Hi ladies,
I have been on Plaquenil 2 years and had liver function and other blood tests done by my specialist prior to going onto Plaquenil. I currently see her twice a year, have an eye test once a year but at this stage she hasn't repeated any blood tests although my GP generally has me do blood tests once a year as normal practice. I recall the specialist telling me originally that information she has read indicated impact on eyes generally only occurs after using Plaquenil for 5yrs or more - and even then that's not with everyone. I have an appointment in early May with her so I'll check then her thoughts about blood tests & eye tests again. As we have discussed before I think there is a lot of difference of opinion due to there not being much research to date for specialists to work with.

There must be an established best practice protocol for checking liver function in patients on plaquenil, it is not a new drug and people have been taking it for a number of years for other medical conditions. I have my second appointment next Friday with Dr Harries, I will chase it up my end too. Surely the drug manufacturers must give guidance on it's usage to the medical profession. I know that it is common to take palquenil for many years with other conditions, so I am not too concerned at taking it for the relatively short period that FFA requires. However, I do want to keep myself safe. On a lighter note, I have discovered 'buffs' I have ordered 4 off the internet and am going to use them in the gym and on the beach when I go on hols next month, they are so comfy and you can make them into headbands, bandanas and all sorts.

Hi Paula. I see Dr Harries every 3 months. I travel up from Brighton. I see him because he is the nicest consultant I have seen. Although he doesn't necessarly offer anything different from other consultants, he cares, is attentive and makes me feel that I am not been rushed. For me it is not just the information I am given on FFA that is important, it is the way that information is given.
x

Paula, I agree 100% with Liz. I have to travel from London to Manchester to see Dr Harries but it is worth it for the reassurance that I get being treated by him.

Hi Simone, I've just had my eyebrows tattooed! I'd say go for it! But please make sure you go to someone who is very experienced. I have one eyebrow with hardly any hair left and the other has about a third left. There won't a problem having them done. An expert in medical tattooing (from Nouveau Contour) has done a brilliant job and I am thrilled with the results. I now feel as though I have my features back. I need to return in a month's time for fine tuning the colour and shape of my new brows and then a third and final time. This is included in the cost. It should last for 1-3 years.
Good luck!

Hello everyone. I get my biopsy results on Tuesday but the dermatologist is almost certain I have FFA. I cried for 3 days after my first visit with the dermatologist. I had a complete hysterectomy 10 years ago and initially I thought the symptoms were all related to menopause. Right now I am wearing a hair weave and I have eyelash extensions. My brows are sparse but recently have started to grow back which is totally inconsistent with the FFA diagnosis, but I will take whatever I can get at this point!! I have an appointment with Joseph Paris in NYC for a wig consultation next week. If anyone has a Joseph Paris wig please tell me about your experience.

Judy from San Diego
Hi ladies,
I am way behind in reading all the posts. Playing catch-up after
returning home. Yes, Pam, I am home and would love to meet up with you. My email is jkeller@aol.com.

Hi Aimee,

Thank you for your comforting words. Today was not a good day, but I'm taking one day at a time.

Also, Bernadette and others--

The whole idea of a wig has been a big deal for me. I am an au natural earthy kind of chick, so conceiving of myself with a wig was a hard concept to embrace.

My daughter suggested I check out YouTube and I stumbled on a woman who has scarring alopecia who has done a gazillion wig reviews (cool, helped me find wigs to try as a start)but listening to her journey, and watching several of her videos that really touched on the alopecia experience, just switched my whole perception around wearing wigs.

Here's a link to her initial video reveal about having alopecia for anyone interested: http://youtu.be/zJuiPpz6Gww

Besides a whole boatload of videos just focusing on wig reviews, she has several videos that go over her decision to shave her head bald and that just document her positive attitude in dealing with scarring alopecia.

You might find it empowering to watch a few of her videos: search the Jo Ann Gray youtube channel for alopecia as a keyword, or just browse through.

Also, I absolutely love the wig reviews because 1) I'm not interested in spending a fortune on any one wig, 2) it's helpful getting user reviews from an alopecia sufferer about wigs that I can then just hunt down online by exact brand and model, 3) she often showcases the shorter styles that I also favor.

Also, will share that I found some other very excellent videos on youtube relating to how to make a wig hairline look more natural. Invaluable!

Hey Judy and Pam:

I have not been on this board for awhile, but I would love to be included if you two make plans for meeting in San Diego.

Best, Lace

Oh, Debs--

Loving the new do! I haven't been on the boards for some time, so I'm just now seeing it. It's so wonderful on you! I'm thinking about going longer, but I still haven't opened my other 'Meena' wig yet. Still, there's something about it being spring that makes me want to look a little different. We'll see!

Hi Lace, glad you are still liking your Meena wigs, I have become addicted to wig buying now, I have found a few websites in the UK that often do half price deals and I check them out regularly and pick up what I want at big discounts. I have a new Drew wig coming soon, I need to get it cut so I can wear it to work in the future. I am 'growing' my hair now and slowly wearing slightly longer wigs. AC, thanks for the YouTube info - I find it very reassuring watching other people talking about their supplemental hair. Bernadette, welcome to the group, please let us all know how your wig purchasing goes, maybe you will be able to wear your weave for quite a long time yet. XXX

I have been diagnosed by biopsies of either discoid lupus or LLP. I have scarring hair loss behind both ears & up to top of front of head. I have also had 2 basal cells on a part bald spot. My latest dermatologist wants me to use clobetasol 60cc 2 x a day with 5 refills. He said nothing about stopping it for 2 weeks at a time (which is what I've read). Has anyone ever hear of this? Thanks for any help. -Sharon

Sharon, clobestasol does not stop the hair loss, it just treats any redness/itching that some people get with scarring hair loss. I advise you get a definate diagnosis because lupus is a condition you need to get medical help for ASAP as it effects other parts of your body - not just your hair.

Aimee, thank you for the YouTube info. Debs, I will keep the group posted on the wig search =).

Lacy, It would be great for the 3 of us to meet up. When Pam gets our messages let's make plans.

Simone, same as Pam has just said. A derm gave me clobetasol last November, he said use it for 2 to 3 weeks every 3 months if I had redness/itching. I only used it for 7 days just to see what would happen but I don't thankfully get any redness/itching so I never used it again. Dr Harries has confirmed it does not do anything for hair loss.

Good afternoon from Chicago,

Question: has anyone taken minocycline?

I have been checking in periodically and my how our numbers have grown! For a "rare" disease there are certainly alot of us. Like you all, I see many hairlines in women in the 40-60 age group that absolutely must have this as well. And contrary to what I thought a year ago when I was diagnosed, the hairloss is not immediate. So I've been putting off the wig purchase for the time being. I've also had alot of practice with my new favorite waterproof eyebrow liner, "Make Up Forever" Professional Aqua Brow. I use the lightest shade and it fills in nicely and is still there at the end of the day (even swimming).

I keep hoping that treatment will do something. I just saw Dr. Barbosa yesterday and I didn't leave with much hope. I'm still experiencing loss and mild itchingat the top of my hairline which—let's face it— once that is gone it is time for a wig. The loss at the sides has really about stopped. She said that in her experience that FFA seems to take a certain amount of hair no matter what!! Am I just slowing down the inevitable and the meds are pointless? Debs has a great looking wig, but I have long hair and I can't imagine adding another layer of hair on top of my hair. Debs, did you cut your own hair short?

Other than Rogaine 5% once per day, I'm currently I am on Plaquenil 200 mg twice a day and she added Minocycline 100 mg twice a day for some added immunosuppresant action (the doxycycline was $300 for 1 month supply so the pharmacy called and she switched to minocycline for $36!) I had asked about Actos again, and she said that she'd prefer to go to Cellcept which is for transplant patients if I wanted to accept increased risk!! She does not believe that thinning the skin with Clobetesol or injections is helping. The Protopic and Elidel are so expensive that I'm resisting paying $315 for one small tube. I have been using samples for the past few months and I'm not sure if the creams are doing anything anyway.

Ok. . . so enough "crabbing". . . I'm just feeling down so thanks for giving me a place to vent. . . I know you all have had these moments too.

Hi Celia would love to join your group meeting and share discussion face to face! unfortunately I am teaching thoses days,available 10th May to meet anywhere! Or if anyone visits Dr Harries and wants to meet up in the Trafford Centre for lunch, 10 mins from the hospital I would be only too pleased X

Thanks for thinking of me, Pam!