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: 564
Latest Activity: on Tuesday

Discussion Forum

Finasteride case study success FFA

Started by Jacqui. Last reply by Ralph on Tuesday. 7 Replies

Came across this case study from Nov2015, which you may have already seen. i have just started Finasteride but not this dose so will discuss at my next derm apt.…Continue

FFA and common beauty aid ingredients

Started by Geri. Last reply by Toby Aug 16. 11 Replies

Hi,I am having phototherapy treatments on my hairline and eyebrows and I am seeing improvement (inflammation/red follicles clearing and some hair growth).   I am seen by a local dermatologist whom I love.  She is an advocate for her patients.  It…Continue

Tags: Sunscreen, FFA

EMULAID for Lichen Planopilaris (autoimmune skin condition can harm hair follicles)

Started by Booville. Last reply by Diart Aug 8. 1 Reply

Has anyone tried this product?   I read someone stating "I have a rare form of scarring alopecia called lichen planopilaris. When it flares up, it is very painful and of course I lose more hair. I have been using emuaid max for about two weeks and…Continue

Regarding my successful trial with cannabis oil tincures!

Started by Robin. Last reply by Booville Aug 7. 66 Replies

I am letting you all know of my trial of using cannabis oil tincture on my hairline for the past 4 months. I was diagnosed with FFA about 5 years ago. I have used finasteride and clobetasol as well as tried steroid injections and doxycycline. I also…Continue

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Comment by mc on August 6, 2019 at 11:25am

Hi

I was told by my dermatologist at Mass General to use only mineral sunscreen with zinc.  This summer I have used Aveno Mineral as that is what she recommended.  She also suggested Vanicream line for cleaning and moisturizing.

Since I gave up using any product with chemical SPF and fragrance it seems I'm in remission but what I've lost is gone sadly.  I may look into transplant if FFA is truly done.  So depressing.  Head bands, Toppix, and Joan Rivers Good Hair Day are my friends!  Also until I had my brows done I used a product called Wonder Brow Gel, it is great! 

My dermatologist has a strong hunch FFA may be caused by the use of chemicals in our skin products.  I would love to know what we all have in common to have FFA.

Comment by Sarah on August 6, 2019 at 5:29am

Thank you so much for your comments everyone - Jamie, Toby, plf... I'll deffo look into all these suggestions! For the next month or so I'm going to take Mg, Zn, B vits, E, D, probiotics, and glutamine (think my gut needs healing), low/no gluten, topical german chamomile and rosemary essential oils shaken up in water, and I'm looking into immunomodulatory herbs like astragalus. Accutane sounds interesting. I don't think I'll be able get it from my GP, but I'll ask.

I'm avoiding the swimming pool which may be a bad thing :-(  because it was my form of meditation. I'm looking for replacements for lippy. Even the organic shampoo I was using has linalol and limonene... I stopped sunblock instantly, am now rather tanned! Jamie - what make of sunblock is yours? Btw I wonder if the vit D connection and the sunblock connection are connected?! Also I had the idea that as it's a kind of self-attacking thing, I'll be kinder to myself, instead of ticking myself off for things and thinking I should be doing better.

I've told a couple of my friends, which helped a lot.

I do regret not making the most of my hair while I had it... totally took it for granted... and because of that I want to try and make the most of the rest of everything, or simply be more grateful for all the good things. I did that after surviving cancer, but let it slide... it's so easy to forget! Lucky to be alive :-)

Comment by Miss Mymble on August 6, 2019 at 2:29am

Hi Donna. 

Just saw your question and thought I would reply. 

I use the shampoo and conditioner from Green People and their line Neutral (it needs to be that line or else their products contain limonene and linalool). 

They also have a 24h facial mosterizer in the Neutral line without the ingredients we try to avoid (at least as far as I know..). 

The ingredients for the shampoo is as follow: 

AQUA (SPRING WATER), SODIUM COCO-SULFATE (FROM COCONUT), COCAMIDOPROPYL BETAINE (DERIVED FROM COCONUT), DECYL GLUCOSIDE (DERIVED FROM CORN), ALOE BARBADENSIS (ALOE VERA) LEAF JUICE POWDER*, CAMELLIA SINENSIS (GREEN TEA) LEAF EXTRACT*, ANANAS SATIVUS (PINEAPPLE) FRUIT EXTRACT, YUCCA SCHIDIGERA (YUCCA) STEM EXTRACT, MARIS SAL (SEA SALT), CITRIC ACID, GLUCONOLACTONE, SODIUM BENZOATE, GLYCERIN. *83.3% ORGANIC

Comment by Donna on August 6, 2019 at 2:16am

Does anyone have any suggestions for a shampoo & conditioner without the harmful chemicals?  I have a list someone posted that I carry with me & I’ve got rid of products with those in them.

methylcloroisothiazolinone

limonene

linalool

fragrance

dodecyl gallate

Comment by Plf on August 5, 2019 at 11:09pm
  1. Hi Elizabeth, I will try and down load to this forum, as you probably don't want to give me your email address
Comment by Elizabeth W on August 5, 2019 at 9:32pm

I've tried to google the  review of current drugs for FFA has just been published using the terms Nonsurgical hair restoration treatment: Cutis, cutaneous medicine for the practitioner.  Dermatology July 30 2019.  Doesn't give me results.  I have received some ResearchGate hits.  They send requests to authors.  I used to have a Research  Gate subscription when I was a college/university  librarian--but now that I am retired, I can't list any place of employment.

Comment by AnnieMay on August 5, 2019 at 8:14pm

illustr8r- EVERYTHING is worse for me in hot weather! My skin, the texture of my hair, my sweaty itchy tight forehead. Does anyone get red "hot spots"? I have one on my temple now. Ugh. So frustrating

Comment by pauliegirl on August 4, 2019 at 10:22pm

Hello Sarah,

If you’re willing to consider taking accutane 20mg, in my 3.5 yrs of research and personal experience with this crap disease (though any disease sucks!!;), it’s the best shot we have at stopping the loss. I remain on it for 1.5 years now and the loss stopped appx 10 months into it. I have other things at play: other meds, supplements, eating gluten free, organic, and for the last 7 months, vegan. Got my d up to the 70 range. 

Anyways, google isotretoin (accutane) and ffa and you will see the study from Poland where appx 75% of the FFA patients who took it for a year, then stopped, then were checked 1 year after stopping, had no further loss. Compelling compared to every other study and I think I’ve seen them all!  Another study just popped up on google scholar yesterday with a similar med stopping loss but it was only on one patient.

In summary, if my sister or daughter or friend was diagnosed, I would say get yourself on accutane 20mg daily immediately (no side effects for me btw), ixne gluten100%, do your best to go free of all animal products (it is indeed doable and enjoyable!), stop using anything with chemical spf (I use all herbal makeup and skincare now, and henna to color my hair, zinc oxide sunblock from my herbalist), manage your stress better, and get your d level 60’s-90’s. 

All the very best to you! 

Jamie

Comment by illustr8r on August 4, 2019 at 8:46pm

Yay or nay...hot weather makes the bumps of  “basketball “ and/or “chicken” skin more noticeable? My jawline is really lumpy bumpy right now. :(

Comment by Plf on August 2, 2019 at 7:45pm

Hi all, a review of current drugs for FFA has just been published, just google Nonsurgical hair restoration treatment: Cutis, cutaneous medicine for the practitioner.  Dermatology July 30 2019.  This covered the regime of drugs my dermatologist prescribed, oral Minoxidil, dusteride and spironolactone.  Bearing in mind my deem said I had FFA & female patterned baldness...Sarah you definitely need to treat your low vitamin d, I too had that at one stage, tablet s are available over the counter in Australia Ostelin, my dose was 1000iu daily.  Low vit d implicated in a lot of auto immune disorders as well as depression, poor bone health..Hope this is helpful

 

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