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Comment by Kath UK on February 23, 2013 at 4:10pm

Hi Simone. Nice to hear from you! To answer your questions - no I don't wear a wig though I am now considering some sort of hairpiece - maybe a sort of fringe type thing. I don't know where I would go to get one here in Edinburgh but I intend to have a look online. I've lost almost all my eyebrows now so I use a semi permanent eyebrow pencil. I lost all the hair on my arms and legs first off (at the time I was quite pleased because I thought it'd be great not to have to shave any more!).
As to losing your mind..... maybe it's a bit easier for me because I am not a young woman. If I was in my 30's I'd be truly devastated and I am very sympathetic towards younger women (and men) who have alopecia. I've found that being older makes it easier for me to be philosophical. Also I have a very supportive husband and family and friends too. That helps a lot.
I've lost four good women friends to cancer in the last six years. Each one went through chemo and lost their hair and they had to deal with suffering from cancer too. Seeing that, kind of put things in perspective for me a bit.
I do still get a bit depressed of course! I wear hairbands a lot and hats too (I HATE windy days). I've probably got the biggest collection of hairbands in Scotland......
I guess I cope because I haven't much choice!

Comment by Simone NJ USA on February 23, 2013 at 2:58pm

Hi Kath:

I wanted to ask since you have had it for 10 years..are you wearing a wig? How much have your eyebrows been affected though out the years? I so amazed that someone can be dealing with this thing for so long. I think I would have lost my mind by then...how do you cope with it?

Comment by Donna on February 23, 2013 at 2:57pm

Hi. I am Donna from Canada and I just joined the FFA group after becoming engrossed in all your posts. I have not been diagnosed by biopsy but I am sure I have FFA. I lost my eyebrows around 2006 and got a tattoo and like it much better than looking un the mirror and noticing I had wiped one pencilled brow off at some point. I did not notice the hairline for awhile and look back in pictures to try and determine when it started. I noticed about 3 years ago but it had probably being progressing for years by then. I had a naturally high forehead already. I have now lost at least 1.5 inches and changed my hairstyle to try and cover. If every hair is in place it is not too noticeable but on a windy day my grandson looked at me with horror and said " Grandma, you are bald!" I went to an MD of functional medicine out of country almost two years ago with my main issue being digestive problems (constant diarrhea).
Other issues - hair loss, dry mouth with dry cough, eyes don't tear. I was told that all my issues were autoimmune triggered by gluten and stress. I have been on a strict gluten free diet for 21 months with a few accidents. My digestive issues and dry mouth and cough are non-existent most of the time. I was also told that the only hope was to stop the progression of FFA not regrowth. I measured how far back my thinning hairline was a year ago and there has been little if any change. I am not taking any prescriptions but am taking supplements specifically for hair health on top of the handful of supplements I have taken for years. So, in my case I believe stress, gluten and genetics all played a role. My sister and cousin also have FFA. I don't feel that this means gluten plays a role for everyone with FFA but was most interested in the discussions in this regard and was compelled to share my story.

Comment by Kath UK on February 23, 2013 at 1:42pm

Thank you so much, Debs, for posting the report of your visit to Dr. Harries. I'd read about him some time ago but had never seen a report from anyone who had actually had an appointment with him. I might ask if my dermatologist would refer me as I could fly down to Manchester from Scotland but I've already lost about 5 cm from my hairline and it is still progressing. I've had FFA for about 10 years so it is a slow moving thing. All I've ever used is Dermovate.

Comment by Susanne on February 23, 2013 at 12:01pm

Thank you, Debs, for taking to the time to report on your visit. I do find it astonishing that there is no one in London who deals with this at all, but I'm glad you found a good doctor who cares and is doing his best to treat women. Of course, there is no evidence that a gluten-free diet will help FFA, but there's also no evidence that it doesn't. There have not been any studies done, nor will there be anytime soon. No one knows much about this condition. My aim is to try to get at what is causing my body to have an autoimmune response and to cut off any other possible autoimmune illnesses. There is plenty of evidence that gluten sensitivity is related to autoimmune conditions.

Comment by Lorn. New York, USA on February 23, 2013 at 11:28am

I thought I would give an update with the medications I have been taking. I saw the dermotologist yesterday and I no longer use the clobetasol propionate solution in my hair and instead I am to put in the scalp behind the hairline the desonide cream. I am to no longer put the desonide cream on my eyebrows but instead use rogain applied with a q tip. I originally started with one dermatologist and this is the second time I have seen this one. I think that's rat of the issue this time was my skin thinning. He also said that the desonide cream on the eyebrows for a prolonged period of time is not good. Still taking placquenel and antibiotic. The dr asked me if I had any signs of lichen planus since this is related which I don't. I also had more shots yesterday which hurt like nobodies business.

Comment by Debs on February 23, 2013 at 11:03am

Rebecca, the problem is that because the condition burns itself out at different places you can't be certain if it is the drug or it would have stopped at that point on it's own... He did not give a figure of what percentage of people it can help because you can't prove it was the drug... I have no irritation or itching either Heidi, the steriod injections are to stop the hair loss, Dr Harries said he has found them to be helpful. He was realistic and did not in any way lead me to think there was a cure but we can try to stop further hair loss. It is just a question of having a go and seeing what happens. I have agreed to be part of a survey that I know Celia is already involved in. It would be extremely useful for medics if they did have a central database for FFA and they could compare the effects of drugs/doses etc..

Comment by Heidi Short UK on February 23, 2013 at 7:26am

Hi Debs
So glad you had such a good experience with Dr Harris, he really does seem to be thorough and knowledgable, which makes a huge difference from alot of doctors, which in turn gives us confidence! I had contact with him a few moths ago, and he was trying to get founding for a data base for all FFA sufferers, which would be really interesting,did he mention any progress on this? Iam not under Dr Harris, as I am happy with my own dermotologist but I am on the same medication as you, except the steroid injections which at the moment I have said no to as I don't have iritation or itching. Glad it went well!

Comment by Debs on February 23, 2013 at 1:07am

MY APPOINTMENT WITH DR HARRIES:

I gave him my letter from my own derm confirming I have FFA from a scalp biopsy. Dr Harries examined my scalp. He sent me for a blood test to check liver/kidney function before I start hydroxychloroquine sulphate, he will ring me in a week with results. I have got the drug. He gave me a prescription that I filled at the pharmacy at the hospital so I can start the drug immediately he gives me the all clear on my blood test. I went to the medical photographer and had my hairline photographed so he can see the progression of the FFA. Dr Harries said he will give me steriod injections in scalp next time - said he has seen evidence that can help. He can also give me the doxycline when I have started taking the hydroxychloroquine (you can take both together but he starts you on one to check for side effects because if he gives you both you can't tell which drug is effecting you). I had an eye test with a nurse.

I asked how far the FFA can progress. He said it can be between 1cm and 8cm. You can also lose hair from the back hairline (nape of neck). You can't tell for certain how much a person will lose but often people that lose hair slowly lose less than people that lose hair faster.

So, it is hydroxychloroquine, doxycline and steriod injections in scalp to start with. He said there are other drugs you can use to suppress the immune system, like Actos, however since Actos has now been banned in France for all uses it is something you need to really think about - I said I don't want to use that drug.

Dr Harries asked if I wanted to keep seeing him because of the distance involved (I flew up from London to Manchester) because he could recommend treatment and my doctor could prescribe, he did then add that he can't make my doctor prescribe a drug for me he is only recommneding... I don't want to take a chance of my GP not going along with Dr Harries recommendations so I will continue to fly to Manchester and be treated by him.

I asked about the gluten free diet. He said there is no evidence to say it helps FFA.

Any ladies in the UK I would strongly advise you ask your GP to refer you to Dr Harries. I know it is not convenient for most of us to travel to Salford but it is worth the trek. I flew to Manchester. The taxi was £28.00. I used a fixed fare taxi company that have a booth outside Terminal 1 Arrow Cars 0161 489 8899 and I got a taxi back from the hospital that was a fixed fare of £23.00. There is a free phone to a taxi company in the main reception opp the M&S shop.

I am so SO grateful to Celia for giving us all this info on Dr Harries and encouraging us to see him. This is the first doctor that has really understood this condition.

Comment by Alice on February 21, 2013 at 7:23pm

Stacy, I am interested in your comment that the pill and implant you were using when you started losing your hair were androgenic. I noticed my hair loss a few months after I had a hysterectomy and began using a vaginal cream w/ testosterone in it. Not long after I switched to one w/ just estrogen, my hairdresser noticed new hair growing all over the top of my head. Unfortunately, I haven't had any regrowth at the sides, where it's the thinnest. or along the hairline. But I'll take what I can get. I tried Nizoral but found it to be a bit harsh, especially since my hair tends to be dry.

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