Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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Comment by Liz on June 13, 2013 at 5:22pm

Hi Celia. Thanks for the information. I tried Doxycycline but I kept getting thrush so I gave up after a couple of months and I used the Minoxodil but it made my eyes burn...The things we are willing to try in the hope of keeping our hair! x

Comment by Celia on June 13, 2013 at 5:17pm

Hi Liz - good news that you are now reunited with your derm - I remember you saying there was a long wait between appointments. When I saw Dr Harries last time - he suggested Dutasteride and said that it was growing in prominence in the literature about hairloss, and gave me a leaflet about it. It says 'This medicine is for men only. It must not be taken by women, children or adolescents.'
It's used as you probably know to treat men with an enlarged prostate. I read the entire leaflet. I've copied a piece below for you.........................

Originally Posted by WomensHairLossProject View Post
Are doctors starting to prescribe Dutasteride for the treatment of women's hair loss as well? I know that Propecia is prescribed for some women, like those not planning to have kids anytime soon, but I just read today that a woman is taking Dutasteride so I'm curious if this is common ??

If doctors are starting to prescribe dutasteride for women with hair loss, it is certainly not “mainstream.” There have been several studies examining the use of finasteride in women with hair loss and the study with the most scientific validity essentially showed that there was no significant response. DHT has not been proven to be a mediator of hair loss in women and therefore its reduction, whether by finasteride or dutasteride, does not make sense as a treatment. However there are a few anecdotal reports of some women responding to finasteride. So the shorter answer is no, it is not common to treat female pattern alopecia with dutasteride. I would stick with the proven treatment of minoxidil.
__________________
James A. Harris, MD, FACS
Member, International Alliance of Hair Restoration Surgeons
..............................................................

It's interesting that your derm is seeing more people with FFA. There was no mention of paying privately for the drug.

I hope you get on well with the Doxycycline, Liz. Best wishes. x

Comment by Liz on June 13, 2013 at 4:25pm

Hi. I hope that everyone is well. Today I went to my local dermatologist.I hadn't planned to as I see Dr Harries and also wasn't sure about my local derm. However I'm glad that I did. He was helpful and told me a few things that I didn't know. He feels that Doxycycline is the best way forward with this disease if it's tolerated well by the person taking it. He said that less and less people are being prescribed Hydroxcloroquinine (I am not sure if he said that to me to make me feel better about not taking it) He then prescribed me Dutasteride which he said is been used more. However I may have to pay privatly for it due to licensing of the drug. He says that he feels that pollutants such as the spraying of insecticides may well have caused this disease and that they are doing more and more studies. He hopes that towards the end of this year they will be getting as many people involved in the studies as possible. He said that due to the conection with lichen planus they (dermatologists) were hopeing to study hair, nails and the vulva.He seemed very enthusiastic today and when I told him that I had seen Dr Harries becuse I felt that he had left me too long after giving me such life changing news he said that they were now putting on more clinics and that he was meeting ladies with this disease on an almost daily basis. xx

Comment by Celia on June 12, 2013 at 4:33pm

3M DROPS from Philip Kingsley.......... I tried to order some more online today as I have done in the past but was told there has been some legislation banning PK from keeping the 3M drops on the premises. Apparently one can only get these on prescription now from PK's clinic. To do so now I would have to have a follow up appointment (cost about 115 pounds)The drops cost 50 pounds a bottle. Heidi - I remember that you used to use PK's products - any ideas on how to buy the 3M drops ? I told the receptionist on the phone that there was no point in a follow-up apt with a trichologist as I am already seeing a dermatologist. The 3M drops have minoxidil in them - still not sure about trying Regaine, but I know that some of you have had some success with this.

Comment by sammi on June 11, 2013 at 2:58pm

The beautician told me of a product called revitalash for helping eyelashes x An American doctor invented it for his wife who lost her eyebrows and eyelashes to treatment for cancerx

Comment by Debs on June 11, 2013 at 6:44am

EYELASHES - When we met up at Celia's for lunch last month we had a conversation about our eyelashes. I knew mine were not as long/thick as before but since then I have really looked more closely and I can see I am starting to lose eyelash from the lower lid on the outer end. I am going to get my eyeline tattoed in a couple of weeks time so create an illusion of having more eyelashes. I am not going to have a thick line, just something quite subtle to enhance my eyes. I did notice the first time I had my eyebrows done (November 2011) that I did not experience any further hairloss in that area. I don't know if the act of tattoing the skin somehow stimulates it and helps to stop further hairloss but I am hoping that having my eyeliner done now whilst I still have some eyelashes might stop further shedding. I will post photos after I get it done. XX

Comment by sammi on June 9, 2013 at 2:19pm

Celia regarding your post on medication I have been taking hydroschlorquine for over 6 months twice a day and it appears to be controlling my hair loss along with the nightly use of regaine! I never suffered with a red scalp externally so cannot comment on any improvement there! has anyone had a biopsy with Dr Harries he asked me to have one when I initially started seeing him but was too afraid it may leave further damage but have often wondered what it would show?My optican told me not to worry about my eyes and hydrox. he said its very long term use although I would be afraid to come off the drug. Nioxin shampoo and conditioner makes my hair feel much thicker and is especially for hair loss and thining hair, hope this info is of use. x

Comment by Debs on June 9, 2013 at 3:04am

Jane, if you had an upset tummy with hydroxychlorquine sulphate I suspect it is because you had the generic make of the drug, if you ask to try plaqeunil it should not give you problems. This is hydroxycholoquine sulphate by a different manufacturer. I always make sure I get this brand because it is gentle on your tummy. XX

Comment by Alice on June 8, 2013 at 8:05pm

Pam, the thickening shampoo & conditioner that I am using at the moment and like a lot are the L'Oreal EverStrong line in the turquoise tubes. They are sulfate-free, claim to be good for your scalp, and smell like rosemary and mint. They are readily available in most grocery/drug stores, reasonably priced, and often have coupons in the Sunday paper.

Comment by Plain Jane on June 8, 2013 at 7:53pm
Rita, Absolutely get your husband to do the diet with you. I couldn't have done it without mine. Give yourself at least a month to get used to it before you abandon it. And Jules, don't feel like a fraud! I work for a neurologist and there are patients coming in every day who have truly terrible issues to deal with. Like you, I am thankful that I don't have it worse! Celia, I used to be a teacher, too. I don't miss "teaching to the test" but I do miss the total absorption of that life. As a teacher, you're definitely too busy to think about how you look LOL.
Cheers to everyone and thanks again for your support. XX
 

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