Replies to This Discussion

Permalink Reply by sammi on May 2, 2013 at 1:11pm

I have used Regaine uk version recc by my derm Dr Harries it has made a big difference to my fringe area which is where I apply it once in the evening now just over six months and no reaction. I also use revitalash for my eyebrows my hairline appears to be okay at present with regaine and hydroxchlorquine twice a day although I have lost all the hair from my legs arms and fine facial hair - no longer have to worry about my moustach! has anyone else lost body hair? keep up the good work everyone love Sammi

Permalink Reply by Pam on June 18, 2013 at 2:52am

Interested in your comments. I have lost the hair on my arms and legs too!
Do you think that revitalash is working, as I have lost my lashes and eyebrows too. I was told that regaine would not be any use for ffa, so haven`t tried it yet, but maybe I should!
I have had this for a number of years, but it is now getting to the point where masking it with brushing my hair forwards no longer works, and I am getting very depressed every time I look at myself! Awful.
Have you tried any of the cover up product such as toppik or couvre? Do you know if they are any good?

Permalink Reply by dee on May 1, 2013 at 3:57pm

Hello Veronica - I too was told in December that I had this thing called fibrosing alopecia. It didn't really sink in until the skin clinic starting taking pictures of my forehead to monitor the loss. I'm in Scotland and it seems to be quite rare here. My doctor has had only 7 case over a number of years ! I have also got 'excessive shedding' ( The doctor's words) on the rest of my head and an iron deficiency.There seems to be little help anywhere. If I am going to lose most of my hair for ever I sort of want to get it over with. This obsessive looking in the mirror is demoralising. How long does it take anyone ?

Permalink Reply by Debs on May 2, 2013 at 5:00am

Dee

Please check out the main page on this group, we have pretty much discussed everything related to FFA since Celia started the group last summer.

FFA first diagnosed in 1994. Most GPs and dermatologists are not aware of it and don't know how to treat it. Cause is unknown. Hair loss is eyebrows, front hairline and sometimes the back hairline. You lose between 2cm and 8cm - can take several years before the hair loss stops. You don't know how long your hair loss will last until it stops... the doctors can't tell either. Lots of derms give a steriod lotion called Dermovate as a treatment - this does not work! It can help calm down your scalp if you have itching and redness but does not treat the hair loss.
TREATMENT is :HYDROXYCHLOROQUINE SULPHATE a tablet (also called PLAQUENIL) this drug is used to control inflammation in autoimmune conditions (the inflammation in our hair follicle is what cause the hair to fall out) DOXYCYCLIINE - a tetracycline antibiotic is also used and sometimes STERIOD INJECTIONS IN THE SCALP where the FFA is active. There are immunosuppressant drugs that can be used if these drugs are not effective.

In the UK most of us have asked our GPs to refer us to DR MATTHEW HARRIES at Salford Royal hospital, just outside of Manchester. He is conducting research into FFA and is using the above named drugs to help patients.

In a nutshell this is about it for FFA.

Debs xxx

Permalink Reply by PamW San Diego, CA, USA on May 2, 2013 at 7:52am

Awesome summary Deb. You should move it to the main page so new people will see it easily. I would also like to add that FFA is a type of Lichen Planopolaris (LPP). In The United States people should contact CARF, which is the research foundation for citracricial alopecia. They can give people the names of doctors who have experience with trying to treat this disease. Their website is carfintl.org. Early treatment is essential to try to control the inflammation that is causing the hair loss. The hair loss is permanent and women should be careful about investing in products and people who promise a "cure".

Permalink Reply by Kath UK on May 2, 2013 at 10:35am

Hello Dee - I'm from Scotland too and I've had FFA for about 8 years. The dermatologist I see did say it was a 'rare condition'. I believe that means something that only about one person in 2000 gets (though I'm not certain about that!). My hair loss has progressed very slowly but I think it is different for everyone. Yes, it is demoralising, I agree, especially when you are just diagnosed. FFA is supposed to be 'self limiting' by the way but doctors can't tell you how long it will last. I'm now taking Hydroxychloroquine tablets and using Dermovate lotion which seems to be the standard treatment. I hope you will find this Group as helpful as I have - there's a lot of information on it and everyone is very supportive.

Permalink Reply by silversurfer on May 2, 2013 at 12:35pm

Hi I'm from Dundee and have had FFA for approx. 6 years. My specialist has told me it is now becoming very common in postmenopausal women and the hair loss is permanent and scarring is common. I've tried the dermovate lotion but it seemed to increase my hairloss. I am now taking Ditropan and I also put betamousse on my scalp daily. I am now awaiting an appointment for steroid injections in the scalp but have been told this will only slow down the hairloss. It is very interesting to hear others talk about their problems which are similar to mine.

Permalink Reply by Debs on May 3, 2013 at 2:21am

What is DITROPAN ...

Permalink Reply by Kath UK on May 3, 2013 at 12:48pm

Hi Silversurfer, you say you've been prescribed Ditropan. I haven't noticed anyone else mentioning that drug, what is it? I sympathise with you having 6 years of FFA. I'm a wee bit older than you and have had FFA for a bit longer but it has progressed very very slowly. There's no sign of it stopping unfortunately. I wonder if it goes slower the older you get? I've never been offered steroid injections- only Dermovate. What is 'Betamousse?' by the way?

Permalink Reply by silversurfer on May 3, 2013 at 2:08pm

Hi Kath. Ditropan was prescribed to try and slow down my excessive sweating. It is used for bladder control but is supposed to control sweating. It worked for about 3 months and has now been increased in dosage as I seem to have become immune to it now. Betamousse is supposed to delay hair loss It is a foam that I put on every evening into my scalp. (betamethasone valerate) My hairloss continues so I cant say it helps. I started using dermovate but my scalp erupted into open sores so it was stopped.

Permalink Reply by Mary on May 27, 2013 at 9:49am

M

Permalink Reply by Rita - Canada on June 8, 2013 at 12:08pm

If you care to share, am curious as to who diagnosed you. I haven't noticed anyone naming my dermatologist from Sunnybrook Hospital (Dr.P. Lansang)

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