Replies to This Discussion

Permalink Reply by Debs on March 15, 2013 at 11:20am

Kath, I have previously posted details of NHS wigs in the uk. I am in the process of getting my 1st NHS wigs. You get an order number from the surgical appliances department of your local hospital after being referred by a GP or a derm. They will have local wig salons that are under contract to the NHS, you just pop along and chose a wig that you like (brand name quality wigs, the NHS dont make wigs) You have £240.00 per year to spend. You can have £140.00 for 2 wigs or put it all towards one. There is also a prescription charge of £63.35 per wig so it is better to just get one wig and have one prescription charge. I have a lovely human hair Raquel Welch wig called Diamond being low-lighted and cut into a nice bob at my local wig salon. I pick it up next week. If you have been offered a wig prescription I would advice you take it, we don't pay VAT either because we have a medical condition so you can get a fab wig cheaply. Once you are referred the referal is good for 5 years. You just ring the surgical appliances dept up each year and ask for a new order number.

Chrissy - I wear fulll wigs, I can't be bothered messing about with a hair piece, I find it too much hassle trying to style my own hair so I full wig is easier and looks better. I do wear a wide headband to the gym though and I can wear a scarf etc.. if I want to.

Permalink Reply by Kath UK on March 15, 2013 at 4:40pm

Thanks for the information about NHS wigs, Debs. That was very helpful. Part of the problem I've found with FFA is that there's nobody to talk things over or share experiences with. That's why this group is so good. I'd like to get a half wig (if there is such a thing) because apart from my hairline loss the rest of my hair is still fairly good. I thought I might have my own remaining hair highlighted and get a matching half wig. ( I'll see if that is possible.) Your Raquel Welch wig sounds lovely. I bet you'll look great!

Permalink Reply by Chrisy, MA USA on March 15, 2013 at 1:14pm

Nobody has it on my family. I got it when I was five months pregnant and I had to discontinue the pregnancy due to a severe case of placenta abruption. At that point I already have a two year old and you could see my eyebrows falling a little bit. Nothing major thought until I again got pregnant and decided to discontinue the pregnancy bc of fetus health issues. I was again 5 mo pregnant. After that experience my eyebrows magically almost disappear. Who knows maybe is God's punishment. Or I carried to much unger to myself that I somehow created the problem. Who knows???

Permalink Reply by Debs on March 16, 2013 at 7:44am

Chrissy, you had to do everything possible to survive and be here for your 2 year old, a dear friend of mine was not able to continue with a pregnancy for health reasons, it was of course very upsetting but it had to be done and I am sure your FFA is in no way a punishment. It may be that when our bodies go through any hormonal changes like menopause or pregnancy it can be part of the trigger for FFA, this is a very complex condition and I think there are a multitude of triggers acting on us all.

Permalink Reply by Chrisy, MA USA on March 18, 2013 at 12:23am

Debs, you are absolutely right. Thank you!! Sometimes I need to be reminded that I'm not alone on this.

Permalink Reply by AC from CA, USA on March 24, 2013 at 12:23am

Hello Ladies,

Still trying to come to terms with life lived with FFA. In particular, trying to decide if I want to embark on the treatment path...just can't readily stomach the idea that taking high powered systemic drugs is a good thing. I am planning to see an alopecia specialist soon and hope that will clarify things for me.

Speaking of this specialist I will be seeing, those in the US, west coast, may be interested in participating in the following study by this US physician with national prominence as an expert in studying/treating alopecia. She's published various medical studies and a book on managing this disease. You can look her credentials up on the internet.

Cicatricial Alopecia Research Study

Dr. Paradi Mirmirani is now enrolling patients with cicatricial (scarring) alopecia in a research protocol that is being conducted in collaboration with the Department of Dermatology at Case Western Reserve University. Patients over the age of 18 with active cicatricial alopecia(any variant, treated or untreated) are eligible for enrollment. Participation includes filling out a hair loss questionnaire, scalp photographs, and two scalp biopsies. Scalp biopsies will be evaluated for changes in enzymes of the sebaceous glands (peroxisomes) which may lead to lipid accumulation and then destruction of the hair follicle. There is no compensation for participation in the study.

For patients requesting further information or patients interested in participating in the study please contact Paradi Mirmirani at: Phone: (707) 651-2552 e-mail: Paradi.Mirmirani@kp.org

Permalink Reply by Debs on March 25, 2013 at 7:28am

AC, I am very intereted to hear what this doctor recommends as a treatment plan for FFA, I understand your concern in taking any meds for FFA, we have to really weigh up the pros and cons before making up our minds. It is very good having so many ladies from different countries on here so we can compare notes and see what is happening around the world with this condition. I look fowards to hearing how you get on. Good luck with your consultation.

Permalink Reply by silversurfer on April 29, 2013 at 2:01pm

Hi I too have frontal fibrosing alopecia. I am 66 and have lost my eyebrows and part of my front hair. I am going to have my eyebrows tattoed. Has anybody had any adverse reactions to tattooing. Also I have recommended to try regaine.

Permalink Reply by Debs on May 1, 2013 at 8:01am

Hello Silversurfer,
Cool name by the way... I had my eyebrows tattoed about a year before I noticed the hairloss on my head, I have since had them done a second time. I have no problems at all. A good friend of mine had hers done too, she does not have hair loss she just did it for fashion and again no problems. Several of us on this site use this as a way to get back out eyebrows and we are all satisfied with the result.

I have not tried minoxidl (regaine/rogaine). That said, my GP did say it was a drug that is proven to work on hair loss, so it is reasonable for you to have a go at it.

My treatment is like many of the ladies here: HYDROXYCHLOROQUIINE SULPHATE

I am being treated by Dr Harries at the Salford Royal hospital in the UK. Several of us in the UK have asked our GPs to refer us to him as he has a special interest in FFA and is actively doing research to find a treatment protocol.

Best of luck with your treatment. XX

Permalink Reply by dee on May 1, 2013 at 4:01pm

Hello Debs - I'm interested in what you said about Dr Harries. I would like to know if there is anyone doing research into why FFA is becoming more common. Surely there must be some factors we have in common. I'm on HYDROXYCHLOROQUIINE SULPHATE too and find it very hard to tolerate.Cramps and frequent visits to the toilet. What's your expereince ?

Permalink Reply by Pam on June 18, 2013 at 3:09am

I am new to the group, but have been suffering from FFA for a number of years. Like everyone ele it seems, I am on hydroxychloroquine sulphate two 200mg tablets twice a day.
Do you know if there are any long term effects from taking this drug? I am not that keen on taking it really, but there don`t seem to be any alternatives. I am not sure if it is working either!
Is there any research as to why this condition has occurred? What has caused it? It seems to be totally random! Do you think taking hormones such as the pill or HRT could have been a causal factor?
I have seen Dr de Beuker consultant dermatologist in Bristol. He has told me that there is not much more they can do, but to keep in touch with derm.net, where new research is published from time to time. I am interested in the fact that Dr Harries is carrying out research, as there seems to be very little out there!
Am very interested in any feedback. Also have you tried any masking products such as couvre or toppik? Have you had any success with eyebrow tattoos? Have you any recommendations for wigs or top pieces? Do you think that hair weaving procedures are any good?

Permalink Reply by PamW San Diego, CA, USA on April 29, 2013 at 10:41pm

Hi, Silversurfer. I have had my brows tattoed without any problems. I have not tried Rogaine - if you try it, let us know what you think!

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