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Comment by Kristen P on November 20, 2017 at 11:18pm

I've had FFA for about six years, have never been pregnant, and am not in menopause (I first started showing signs of FFA when I was about 34). I lost some hairline first, started treating it about four years ago, and while the hairline receding has slowed (stopped? Hard to say officially.) my eyebrows keep burning out (thankfully I got them micro bladed this year - best money I've ever spent.) I have a check up with my doctor next week - will ask her more about the stem cell research on FFA! Thanks for sharing your experience!

Comment by Donna on November 20, 2017 at 10:32pm

Thank you so much @YummyMummy for all the knowledge you have shared. Sounds very hopeful.I have often wondered if the Premarin creme I started using could’ve triggered this disease. My hair seemed fine before I started using that. You say the average time for this is 2 years. Do you mean for the hair to stop falling out & receding. You are lucky to be able to live close to a Dr.who is truly knowledgeable on this condition.

Comment by YummyMummy on November 20, 2017 at 2:42pm

Hi ladies,

I too have FFA and I just wanted to share the knowledge I have collected since being diagnosed about 2 years ago. I have been thoroughly miserable with this condition so I am hoping my post will provide some reassurance. I have been seeing a very reputable consultant in London who specialises in hair only. He is one of the only, if only, dermatologist in the UK (Dr David Fenton) who only deals in hair and other dermatologists refer very difficult cases to him - both my GP and my first consultant dermatologist mentioned him to me. He told me two things that reassured me:

1) the average time for this condition is 2 years. 

2) the condition is very treatment in his opinion. My husband specifically asked 'how treatable is this condition?' and his response was 'Very. I have only known two patients who haven't responded to treatment'. He is well in his 50s so I would have thought he has seen hundreds of ladies in this time.

I am on a treatment plan which is at the gentler end of the scale. I was put on steroids for 30 days initially and had to put synalar gel on twice a day. After the steroids, I was put on 250mg of lymecyline once a day. I have remained on the synalar and the lymecyline and I have had good results - no hair loss in 18 months despite my FFA being active. Dr Fenton tells me that there are plenty of other options available (Plaquenil being one). He also mentioned very recently that a new drug has become available which is usually used to treat arthritis which they are having very good results with (I forget its name). All treatment is aimed at calming the inflammation and ensuring that the stem cell isn't destroyed. 

Dr Fenton is currently leading a very large research project looking at whether there is a genetic link to FFA. He tells me that the results so far indicate that there is a genetic link and that this is triggered by an hormonal event such as menopause or HRT (in my case, I think it was pregnancy).

My advice to all you lovely ladies is to ensure that you see the right doctor and get the right treatment. Normal treatments for alopecia are not right in this case as the FFA is targeting the stem cell, not the hair bulb. The treatment regime that I have mentioned is working for me and comes from someone who really knows their stuff.

I really hope this is helpful to you.

PS I also take a tumeric supplement as I know this helps reduce inflammation. I have no idea if it has had an effect though but makes me feel better!

Comment by illustr8r on November 14, 2017 at 4:53pm

@AnnieMay Yes, I’ve had overall thinning too. My hairstylist thinks I’m holding steady on top which so far let’s me sort of look like my old self. My pixie is really short on the sides with good hair in the back combed forward to cover the loss by my ears. I’m not on anything right now so I’ve ordered all of the essential oils that a lady had listed in a previous thread. Gotta try something. I wash my hair every day though because I have ugly bed head! I’ve tried dry shampoos but they make me itchy...causing me to freak out wondering if it’s the FFA or the product causing it. But that’s just me-my stylist suggested dry shampoo too as an option but I just can’t use it.

Comment by Donna on November 14, 2017 at 12:50am

Yes I have overall thinning AnnieMay It’s best not to wash your hair every day. I’ve also started using dry shampoos. They give a lot of body & fluff. I like Batiste it’s only about $5-6.00 Walmart. then I’ve tried Kristin Ess $15 at Target & also Biotera by Naturell. I forget the cost on that one. Smells really good. But Batiste is my Favorite but it does leave a powdery film which you just pat your head & rub it in & you’re good to go. I hope this helps a bit. It does for me.

Comment by AnnieMay on November 14, 2017 at 12:00am

 I'm sure it's in a previous post but are others experiencing overall thinning? When I brush or run my hands through my hair every morning I lose so much hair.  My hair used to be so thick but now my bangs are so thin (my hair stylist had to cut my bangs further back this appt to cover the loss in my temples and it made me cry) but now my ponytail is getting smaller and smaller. . .Ugh

Comment by Nancy79 on November 6, 2017 at 9:46am

I went back to my notes and discovered I have been on Dutasteride 0.5mg daily for four years (Feb. 2014) except for my attempt to cut back to every other day this past summer. Let me be clear, I did not suffer any additional loss at the front of the hairline when I took it every other day, only increased hair in the drain which was increased overall shedding. (I may two things going on) In four years I have had no side effects and the literature also reports patients experienced no adverse side effects. In my case the drug stopped any new follicles from becoming inflamed and slowed the progression of fallout of existing inflamed follicles so much I only occasionally looked at the hairline. (This is the same positive result reported in the studies at a rate of 50-60% of the time) I feel now I am in burnout.  Sorry, I thought I had been taking the drug five years.

I dug out the research studies that led me to this treatment:

Frontal fibrosing alopecia: A retrospective review of 19 patients seen at Duke University. Barry Ladizinski MD ( among others) Journal American Academy dermatology 2013;68:749-755.

Frontal fibrosing alopecia: A multicenter review of 355 patients. Sergio Vano-Galvan MD (among others) Journal American Academy Dermatology 2014;70:670-678.

These studies compare all of the treatments that had been tried to date and list the positive results or lack there of. Dutasteride was way on top with no reported side effects. It was  a no brainer for me and I have been on it ever since. This drug was not being mentioned on this blog 4 years ago. I made entries but really got no replies until just recently. I avoided wasting a lot of time, expense, hair loss and possible adverse side effects by going to the most effective treatment right away. I hope this helps and your doc will look at it. If not, get another doc.

Comment by Mel on November 5, 2017 at 11:35pm

I agree, Jules Australia.
But we always have a choice. My dermatologist said “I would advise you NOT to choose no treatment,” but that’s what I chose. I chose not to take recommended drugs used to treat malaria that could harm my vision. I chose to change my diet and I believe it’s had a positive impact. Also, good sources of quality water and hydration I hear are important for anyone with an autoimmune disorder.

Comment by Jules Australia on November 5, 2017 at 7:31pm

Although i've chosen not to take any of the experimental drugs for treatment of ffa/lpp (mainly over concern of  harmful side effects & flimsy evidence of their efficacy),  i do agree with Nancy that it does seem strange that doctors will keep prescribing them to patients, but not allow patients, if they wish, to try something that has been used in trials with reasonably better outcomes than drugs used previously; seems a bit hypocritical. CARF website states that doctors should allow patients to chose either 1. to try drugs/treatments on offer or 2. not to use any treatment; as they really can't claim for certain that any of them actually work. At the very least, doctors should be educating patients of all the risks & benefits so at least we can all make our own personal choice. Trouble is that, while there are some good doctors out there, some don't do enough of their own research when using treatments for rarer uncurable conditions; sometimes it seems much of it is just trial & error where many patients are being used as guinea pigs

Comment by Jules Australia on November 5, 2017 at 6:53pm

Nancy79, am i right that in your earlier post you mentioned you cut back on dutasteride but had to go back to using every day as you noticed increased loss. Does that mean you've been taking it for 4 or 5 years pretty well every day? & is that a .5mg dose? 

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