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!

ChrisC - you can wear a wig over long hair. I use bobby pins to pin your hair up or you can use a wig cap. If you look on Youtube you can see videos of women putting on wigs. I have gradually cut my own hair shorter because it makes putting a wig on first thing in the morning for work much quicker. I just pop it on in a second. I have cropped my hair down short, I have worn my hair this short manner times over the years so this is normal for me and I wear it with a headband, buff, silk scarf - I can look OK like this, so I am not always in a wig.

Celia, I can get a days leave from work and I will definatley meet up in May.

Sammi, I am coming up to Salford this Friday, 19 April, I can meet you for a coffee. My appointment with Dr Harries is at 1.30pm but I will fly up and arrive about 9.30am. If you can get together it would be lovely to catch up.

Pam and Lacy, So sorry-I gave the wrong email. It is
jkeller39@aol.com. Please resend.
My computer has been acting up and every time I got online I would get bumpd off. But I am OK for now - am using another provider.

ANY QUESTIONS FOR DR HARRIES ??

Ladies I am seeing Dr Harries in 4 days time, (19 April) if you have any questions you would like me to ask him please get in touch and I will ask him and let everyone know his response...

Debs, I have a question that my derm can't answer. I think it may apply to many of us. Why is most of the hair loss in places where the scalp does not have the red, bumpy follicle? Most of my hair loss is along the sides, whereas the inflammation and itching seems to be only on the top. If it's all from scarring this doesn't make sense. I'm wondering whether some of the hair could regrow. Or perhaps it's just wishful thinking.

Hi Celia
It's a great idea of yours to organise a 'get-together' and very kind of you to hostess it. I'm sure it'll go really well. I'm sorry I'm a bit too far away to come!
By the way; if anyone else in this group lives in Scotland, I'd be interested to hear from you and find out how you are getting on with your dermatologist/treatments etc.

Hi Celia, 14th May would be better for me as its my sons birthday on the 15th, but if that date is ok for everyone else I will try and sort out cover at work. I will email you to get directions.

I think I can answer the questions for you:

FFA can take between 2 cm and 8 cm of your hairline - so whether you end up deciding to wear a wig depends on how much you lose and of course if you personally want to use supplemental hair.

Redness/itching - I don't get redness/itching other people do, your scalp can itch in one area and not another, it is inflammation that is bad enough to be visible and itching so you are going to lose hair from the area at some time.

Genetic predisposition - FFA has not appeared historically in medical records. Both Dr Harries and a derm at my local hospital have told me that. So, our ancestors did not have this condition. I will ask Dr Harries if there is evidence of the tendency to develop FFA in families. I know Liz and her mum both have it.

Celia, the 15th would be the best day for me... but I can make the other dates.

Hi everyone, hope all goes well for you with Dr Harries Debs! Celia as buses are out of the question how about by train, is there a station near you? I will speak to work today regarding getting 15th off, looking forward to seeing you all face to face!!

Pam thanks for the questions, it doesn't really make sense that your scalp changes over the course of the day... and of course what is his 'plan B' after the plaqeunil... yikes, I hope he has one!!!

Celia thanks for the encouragement. I am going into London tonight to see a classical concert at St Martins In The Field with a few friends. That will take my mind off my appointment tomorrow. Last time I had my head photographed, I imagine I will have another photo taken tomorrow to compare the hair loss, I know there has been some. Tonight though I will be wearing a nice long wig out so I will have hair by whatever means necessary. XXXX

Hello Julie, good grief I didn't realise there was another anti-malarial after the plaquenil... I will be poised tomorrow with my pen and paper so I won't forget anything... XXX

ANSWERS FROM DR HARRIES:

1.. IS FFA HEREDITARY (Liz) - not enough historial data on this condition as it was only first diagnosed as we know in 1994, LIZ Dr Harries would like you to discuss you and your mum both being affected, he could do some comparisons of your DNA to see if it throughs any light on this condition. He is interested in people with mothers with FFA and siblings.

2. RESULTS FROM THE FFA SURVEY (Celia) Dr Harries had 52 patients complete surveys and another 50 patients at a clinic in Sheffield. The stats are still being collated and will be done in 2/3 months time.

3. WHAT CAN WE USE AFTER PLAQUENIL IF IT DOESN'T WORK (Pam) - there are other drugs. Immunosupressants and diabetic meds. The diabetic meds are not often used in the UK but he said they are more commonly used in the USA. Recently Drs are also talking about using CUCUMIN (an active part of TUMERIC) for FFA. It has already been used to treat other autoimmune conditions with success.

4. WHY DOES YOU HEAD BURN/ITCH AT DIFFERENT TIMES OF THE DAY (Pam) there is no scientific reason for this, it is just one of those things.

This was my 2nd visit. I had an eye test and a blood test to make sure I am OK to continue with the plaquenil.. I have another 3 months supply. Please note all Dr Harries ladies on plaquenil - when I went to the hospital pharmacy to get my meds they gave me the generic version, I opened the bag to check my meds and asked them to give me plaquenil because the generic version can give people upset tummies. They changed them. Please check your meds before you leave the pharmacy at the Royal Salford and make sure you get plaquenil which is gentle on tummies.

Hello Debs
Thank you for posting your information from Dr. Harries. It was really helpful as I see my derm in 2 weeks and I now make a note to ask for the Plaquenil and not the generic hydroxychloroquine if she suggests I start this drug. The possibility of a turmeric derived drug is also interesting. Someone in this group some weeks ago mentioned that she was taking turmeric tablets from her health shop. I wonder how soon the cucumin pills will be available and prescribed and if it would be worth trying turmeric in the meantime?
Hope the plaquenil works for you and thanks again for sharing your information.

Hi Debs. Thank you for the information. I wonder if Dr Harries might want my mum to get referred to see him. I shall ask him at my next visit. If he is interested in both me and my mum it might be good if he sees us both on the same day.
xx