Linda, if you are interested in antiandrogens but leery of drugs, you might want to look into spearmint, either tea or capsulesi think it may be helping me.

April, I would be very cautious about spearmint when you are pregnant. It's great that your skin has clesred up tho. Congrats!

Jean, I am not really fair-skinned either. . .more a light olive (I have some Spanish blood) but also have a little Irish and English in me.  I forgot that I also had psoriasis as a kid (ankle and knee) but it cleared up when I entered into adolescence. 

I've have had my eyebrows tatooed also earlier this year and am happy with them.  But not happy with the two different derms I went to over the year and a half period when they were disappearing.   Neither derm connected that hair loss to FFA or even mentioned the possibility.  

Alice, I may look into spearmint tea as I am really nervous about stronger drugs altho' they're tempting because they have worked for some fortunate individuals. But at what long-term cost I'm not sure.  I'm sure I'll calm down and reach the point where I am not so obsessive. But until then. . .

Congrats, April, on your pregnancy, your skin changes already demonstrate how hormones affect our skin . . . and our hair.  Your skin problems definitely sound like rosacea even though you weren't officially diagnosed.

I agree with Alice that while you're expecting you should steer clear of any attempts to affect your hormonal levels.   That's why women of childbearing ages are told to stay away from Propecia and Avodart.  Mother Nature will probably provide you with all the good hormones you need in coming months.  Take care.

Anne Louise, how beautifully you put it!  So very glad you're enjoying your summer.  I'll be heading up to Boston on Halloween.

I wondered whether anyone else saw the article in yestredays Daily Mail about the new drug that has been used successfully to cure alopecia? Its called ruxolitinib. Any comments? Is this a potential possibility, or just a false hope?

http://www.dailymail.co.uk/health/article-2727233/Pill-cure-baldnes...

Terry - I stopped taking medication months ago.  Had no faith in it and wasn't convinced that the derm had faith in it either.  My FFA seems to be progressing slowly.  I use dermovate (clobetasol) twice a day.  The inflammation comes and goes.  I eat healthily, don't drink alcohol and take Superdrug Hair Skin and Nails tabs as well as turmeric, evening primrose oil, calcium, vit D and B vits daily.  I didn't like the effects of hydroxyl or doxy and actually feel better in myself without them and also taking meds made me feel like an ill person, if that makes any sense.  I'm not ill, just unfortunately developed FFA, for whatever reason.  I have read about this new wonder drug that seems to home in on A Areata as a variant that seems to benefit from it.  I hope it really does help many people, but I'm not sure how FFA can be helped by taking it.  I'm an active person, I gym , swim, cycle etc and just live in hope that one day The Cure will be found.

Jules - Another suggestion for publicity  for FFA is the Womens Institute Magazine, WI Life.

Also something on TV would be great as well. Not sure if I want to go on Embarrassing Bodies though!!!

If any UK ladies would like another get together, please let me know - it would be nice to see you all again. X

I would love to meet up again, I found it really good to talk to people face to face, share our problems and give each other support!

I would love to join you this time if I may? 

That's good thank you ladies - I will look at some dates and we will try to suit all as before - will pick 3 and hope for the best - I am trying to contact Caro but - no joy ! X

Hello C

Yes I would love to meet up again, I found the last time very comforting to talk to others who instantly understood how I felt. 

Hi all,

I just wanted to update everyone.  I had my annual eye exam yesterday.  It's been 14 months since I started Plaquenil, and my eye doctor says he can see absolutely no adverse side effects to date.  I wish I could say positively that the Plaquenil is helping with the hair loss, but it's hard to know where I'd be if I weren't taking it.     

Hello Norfolk girl

I am in Suffolk so if you need a lift just let me know.

Ladies - a few possible dates for a get together - 25/26/27 September - please late me know which of these dates you are free on then we'll go for the maximum number of people - OK ? I will email directions if you have not got them from last time. X

All of those dates are fine for me. x

Marian, I had a hysterectomy without removal of the ovaries, few months before I noticed my hair loss. I've often wondered if there was any correlation. I haven't had any surgery since then, though.

Good morning ladies - for those in UK with access to M40 near Beaconsfield and would like a get together, I have revised the dates to 16/17/18th of October - I do hope this will be of interest to some of you.  Please say which of these dates you can make and apologies for changing.

Hello C

Really sorry can't make those dates I am on holiday.

meme x

Hi everyone,

Having lost faith in every drug I have taken for this horrible disease, I stopped reading all the articles online about a year ago. But as my hair loss is progressing quite fast at the moment, I was interested to see whether anything new has been published, and saw this recent article by Jerry Shapiro et. al.: "Frontal fibrosing alopecia: a retrospective clinical review of 62 patients with treatment outcome and long-term follow-up". the article reports that of these 62 patients, "Reduction in symptoms and hairline stabilization were achieved in 97% of treated patients with intralesional corticosteroids. Thirty-one percent of patients were able to stop treatments and remained in remission for six months to six years." 97% is an extremely high proportion, and I am of course tempted to give injections a go again (I tried them once and stopped because of the fear of skin atrophy). If any of you have had steroid injections, I would love to hear your experiences. Has it worked for you? Would you recommend trying that line of treatment? 

Thank you so much!

Catherine 

Catherine, I haven't commented in a while, but if you could do a search on my name or steroid injections, you'd find I have praised them many times, yet continue to be in the distinct minority.  Because of a very large group of other chronic diseases and 13 daily prescriptions, several in multiple doses, I had to refuse any other medications.  My derm assured me the steroid in the injection therapy is totally non-systemic and would not interfere with any of my other issues or have any build up or lasting effects anywhere in my body.  Therefore it has been the ONLY medical treatment I have had since diagnosis about 15 months ago.  And I have said repeatedly, my hair loss sounds minimal compared to other ladies' stories.  The angry, itching follicles are totally under control, though I'm not saying they never ramp up and annoy me.  My hairline continues to recede at such a slow pace that neither my husband nor my derm can actually see any difference.  Of course, I do -- because like most of you, I can't help sticking my forehead right up to the mirror and studying it!  But again, the loss is there, but absolutely minimal.  And because I'm following no other treatment, how could I not praise the injection therapy?

Some ladies are concerned about the discomfort, and I want to emphasize that's what it is: discomfort, not pain.  Each treatment takes about 5 minutes and includes a dozen or more injections, with a teeny tiny needle.  Of those, maybe 1 or 2 cause me to wince for a moment.  Rarely have any continued bothering me by the time I get back in the car.  But there is the occasional one that may sting for up to an hour -- that has happened only twice in my experience.  Surely we're tough enough broads to handle that!

Another concern is that "dents" in the forehead skin may follow, [essentially skin atrophy].  Yes, I developed one dent, eventually about 1/4 inch wide and almost 1 inch long, coming diagonally from my receded hairline down my forehead.  I thought it was a little weird, but easily covered with wispy bangs.  Now here's the GOOD NEWS: a few months ago I asked my derm for samples of Retin-A, which she was happy to give me.  I started applying it to my forehead several times a week at bedtime, and within a month the dent was nearly gone!  Added benefit, so were the wrinkles!

Conclusion: I see no reason why anyone should refuse steroid injection therapy.  Go for it, Catherine!  I hope it will work wonders for you.

Dear Anne,

Thank you so much for all this information! It is so kind of you to share your experiences with me. I am now quite keen to give the injections a go, but need to find a doctor experienced in administering them. It is good to know that the atrophy can be combatted with Retin-A cream.

I will keep you posted! Thanks again for the encouragement!

Hi Terry I am sorry to hear that your FFA has flared up again. I really empathize. It is the most frustrating, relentless condition... I am looking into wigs too. Not easy to accept, I know! Will let you all know how things go with the injections. C x

I'm also considering steroid injections.  The topical / plaquenil combination hasn't helped with the irritation & hair loss as much as I'd like.  I am thankful for any improvement, but I think it's time to take the next step.  My doctor has never mentioned injections, so I doubt he'll be able to administer them.  I live in southwest Missouri.  Can anyone recommend a doctor in this area?  I'm about 3 hours from Kansas City & a little more than 4 hours from St Louis.

Actually, I am my dermatologist's FIRST patient with FFA.  She knew nothing about it when the biopsy result came in, but she looked it up on the internet and then suggested the injections.  I know that sounds scary risky, but I trusted her and it has worked well. I believe she may have used steroid injections for some other condition in her specialty.  If you like your derm, it wouldn't hurt to ask.  Mine is one hour away, I'd hate to drive 3 or 4 hours every 6-8 weeks.