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: 172
Latest Activity: 9 hours ago

Discussion Forum

What do we have in common?

Started by cubbieblue. Last reply by ChrisC. Chicago, IL yesterday. 9 Replies

Hello Everyone. I've read most of your posts and in many of them I see similarities in our symptoms, activities and lifestyles, so I thought I would share some information about myself and my life with this illness. Maybe we will discover some…Continue

What type of hair overage do you use?

Started by Sad in chicago. Last reply by sallylwess Sep 8. 20 Replies

I have what you might call a wig let that I use and work with on a daily basis. It clips in. Looks great. But don't want to wear it to work out, walk the dog, hang at pool. What options do others use for activities?Also stopped using any drugs!…Continue

Wearing hairpieces/wigs

Started by Debs. Last reply by Debs Sep 2. 57 Replies

Hello LadiesIn January I cut my hair short, it is naturally curly, this enabled me to just fluff it up a bit and it covered y receeding hairline quite nicely. I have lost about 1 inch at the front hairline and 1.5 inches at my temples. I have grown…Continue

Wondering if there could be a connection: FFA, Bowens disease, Sarcoidosis, Endometriosis & (pre surgery malignant ) Thyroid Nodule...

Started by KayDeeW. Last reply by KayDeeW Aug 25. 2 Replies

I joined this group for digital support, as I don't want to continue to wears wigs. If not before, I can't do it next summer - 2015. I've been in denial ..When friends suggested Rogaine & other options - NOTHING. Bought a new wig. I thought my…Continue

Tags: endometriosis, thyroid, bowens, sarcoidosis, FFA

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Comment by Spenser 9 hours ago

Missouri members: is anyone going to some of the Bald Girls Do Lunch events in Missouri Sept 24-28? The details are here . Thea will be at all the events. I have relatives all over the place so I try to meet her when I can.  It's also posted at http://www.baldgirlsdolunch.org

Comment by Classical Anne in NC mountains 11 hours ago

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.

Comment by Annie 14 hours ago

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.

Comment by Catherine 16 hours ago

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

Comment by Classical Anne in NC mountains 18 hours ago

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.

Comment by Jules UK yesterday
Hi Terry, thanks so much for doing that! The results of all the completed surveys will be collated after the closing dat of 31 October. Then the 10 most frequently mentioned topics will be identified. Part of this process will be a series of workshops where, I understand, willing participants will be invited to help with this process. That may be when you here something more. I'm sort of getting to grips with this step by step...... Apparently, it's a tried and tested process that's been used successfully for other medical conditions to secure research funding.

Please, please, if you haven't already done so, have a go at the survey!!
Comment by terry yesterday

Hi Jules, I completed that online survey and supplied my contact details............so far have had no response whatsoever. But thank you for all your hard work.

Hi Catherine I read you comments with interest and can empathise, I came off all drugs quite a few months ago as I was fed up of the side effects especially with regard to my eyes and sight. Sadly the FFA seems to have completely flared up again, the itching is horrendous and the hair loss very, very marked. It seems we can't win what ever we do. I haven't tried the injections you mention and to be honest, despite the research, feel very uncomfortable at the prospect.

Like so many ladies on this site I am forever looking for alternative therapies etc, but it is looking like the 'wig solution' is becoming a distinct possibility....arghhhhh!!!

Comment by Catherine yesterday

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 

Comment by Ellen - MN, USA yesterday
I'm constantly reading and searching for plausible answers to this problem. I thought some of you might be interested in reading this article about glutathione.

http://experiencelife.com/article/glutathione-the-great-protector/
Comment by Jules UK on Wednesday
It's been just over a week since the UK hairloss survey went live. I was wondering whether anyone had completed it and how they got on? There is another phone conference tonight and it would be useful if anyone had time to feedback. I tried to start a discussion on this website but it hasn't appeared..... Thanks everyone!
 

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