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: 537
Latest Activity: on Thursday

Discussion Forum

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Overthis2018 on Thursday. 10 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

More Tentative Evidence of a Cause: Sunscreen/Titanium

Started by Jess. Last reply by Overthis2018 on Thursday. 5 Replies

I just thought some of you may be interested in the article that will soon be published. It is a case study of one woman with FFA. They analyzed her hair and found titanium nanoparticles in the shaft. This chemical is found in many sunscreens and…Continue

Please reply if you have used sunblock prior to FFA diagnosis. Having an aha moment!

Started by pauliegirl. Last reply by Overthis2018 on Thursday. 40 Replies

Gang,1) I believe that we with FFA have some sort of genetic tendency that is within the autoimmune spectrum.(I was diagnosed 1/2016. I am 50 and when I was 18 started with Raynaud's disease, another autoimmune issue. As well, my autoimmune labs are…Continue

Treat Autoimmune for FFA

Started by Sha. Last reply by Toby Nov 30. 3 Replies

Hi,I want to share that I met with an autoimmune specialist today.  She seemed to really know her stuff and has specialized in treating various kinds of autoimmune diseases for many years. She confirmed what I all ready knew,  my autoimmune caused…Continue

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Comment by Minter on December 2, 2018 at 7:59am

Wow Halfbaked who, those are some awful side effects!  In a way it is good they started so quickly so you knew to stop taking it right away.  

I agree completely with you, better to be happy and healthy in body and brain!  Hair is hair and can always be replaced, mental health well- that is sometimes not so easily repaired. 

Comment by Halfbakedwho on December 2, 2018 at 3:46am

Interesting - I am not sorry at all - I'm relieved. Especially given I am on antidepressant medicine permanently, probably until my dying days, and no doctor thought to consider interactions between the two medicines. I'm also not surprised because whatever side effects are on a label always seem to have my name in parenthesis on the side (as in, "Half-Baked-Who this is for YOU) not that I'm paranoid or anything but really. Really. 

Comment by Plf on December 1, 2018 at 6:18pm

Sorry to hear, that the finesteride effected you like that, one step forward, two steps back..so frustrating, when I discussed side effects with my dermatologist, she said she had never heard of the hair shedding..didn't inspire confidence as I had also read it in the literature and on this site.  So now maybe we hang out in hope for the topical product to come on the market.  Yesterday was a really bad hair day for me, it was 32 degrees and this horrible hot wind..so whilst you in the northern hemisphere are cooling down, we continue to get hotter   On the upside Christmas is just around the corner which means some lovely catch ups with family and friends.  Take care all

Comment by illustr8r on December 1, 2018 at 5:23pm

@HBW I’m sorry to hear you had such negative side effects to Finasteride! I’ve read many comments on the usual hair blogs and the comments about side effects range from none to some-mostly weight gain. The shedding would have freaked me out too. What works for some and not others-so frustrating!

My family dr won’t prescribe it without consulting a dermatologist-and I am in between one right now because of insurance. I’m using oil with saw palmetto in it a few times a week in addition to Castor oil. However, she told me I might not be able to take the herb or Finasteride because of interacting with BP meds...again, so frustrating.

Comment by Halfbakedwho on December 1, 2018 at 3:16pm

 Soooo... I lasted less than a week on the Finasteride. I felt foggy. My hair was shedding all over me (yes this is a side effect). The kicker though - the tinnitus. Like a low hum, a foghorn or a refrigerator motor, in my left ear. We’ll see if it gets better. 

I admit I don’t know if some of the side effects are because I read the side effects - though I didn’t read them until last night because of the motor sound in my ear. And there it  was, along with the hair shedding (I had hair all over me this week) which I hadn’t thought related to the Finasteride (though I did wonder why I was losing more hair whilst taking the cure for hair loss... n’est-ce-pas...)... but I am a depression sufferer though I am an optimistic pessimist and yes - another side effect - depression. Mood swings. Weight gain (which depresses me). Basta says I. Ça suffit. It just scares me too much. 

I eat more or less healthfully. I try to exercise as much as I can (though in winter it’s not as much, alas). I won’t go crazy with a caveman or cavewoman diet, and in France we eat bread. So back at square one, or le premier case. I would rather lose my hair than my hard-fought mental health. Besides, if I get a nice hair piece I will be in a good mood : )

Comment by Bloomingdalekid on November 28, 2018 at 7:05pm

Hi Miss Mymble.....  the consultant had samples of curl that were available to match your natural hair.  I always straightened my curly hair with a heating iron, which in itself was damaging, so when we chose the curliness of my unit we selected “wavy” so that it had body.  Since the unit integrates with my own hair on the sides and back, I chose to have a Brazilian Blowout in order to keep the frizz away.... my hair is actually more frizzy than curly.  The “hair” that she ordered was perfect!  I can curl it, straighten it and actually, in the morning when I jump out of bed, I brush it and need to do little more with it to be presentable.  It’s pretty amazing......

Comment by Halfbakedwho on November 28, 2018 at 7:48am

Hi Miss Mymble -

I don't know if the curls are terribly hard in and of themselves to get in a topper but I think it depends a lot on what sort of curl you have. My curls are intense and spirally in some places, loosey-goosey in others - it's not going to be an easy match with the rest. I would just as soon eliminate the whole dilemma and get me some nice smooth waves (ahh sounds so nice) - and wake up like B.Kid with just a swishy comb-thru. Oh yes, yes ; )

Comment by Miss Mymble on November 28, 2018 at 7:37am

Just to join the choir of praise to your new fab look, Bloomingdalekid. Your hair looks stunning and you eyes looks bright, happy and a little proud (yeaaah! If that’s right, you should be!!). 

Thanks for putting yourself out here and post a picture. It’s indeed encouraging to see how natural and good it looks. Just wow.

I also agree with your statement about us being the guineapigs in the doctors(who-don’t-seem-to-have-a-clue) hands. And I like your little warning about the meds - reminding us to give it some extra thoughts before popping those pills. I don’t thing any of us take the risk lightly. It’s really a matter of pros and cons...and not knowing. Not an easy decision at all. But thanks again to show us how good we can look with this awful disease. 

Ive just written to my normal Doctor (not the dermatologist) and asked him if it’s possible for me to try LDN (Low Dose Naltrexone). Have any of you tried that? Supposedly it should be good for some auto-immune diseases (I have no idea if it will work for FFA. On this board I can see some people with other forms of Alopecia have some success with it).  I would like to try to see if it can improve this but also other health struggles I’m unfortunately dealing with these years. But yeah, I don’t know if my doctor will be willing to let me try. But if so I’ll of course let you know whether it improves something for me in regard to FFA.

I’m also debating with my self if I should try Finasteride. Have asked the dermatologist for a new appointment to discuss it and other options.

But seeing your picture, Bloomingdalekid, really makes me question again if the risk is worth it. No matter what, then it’s cool to know there’s a safe option to regain your hairline again = helper hair. :) 

As I live in the semi-dark North the heat is not something I worry about in regards to a topper (though this current summer was crazy and unusual hot). But I do worry about if a topper (like the one you have) can withstand a sauna (I do the whole winter bathing thing..swimming in the ice cold ocean and end it with sauna-sessions.bliss!). Does anyone know if it’s “safe” to do that with a topper? 

Also, the talk about the need to straighten your hair. What’s up with that? Is it difficult to find a hairpiece with curls? I love having curls so would hate to lose that as well. I know CurlyK has a gorgeous curly hairpiece (thanks for showing us) - but is it hard to come around? 

Comment by Minter on November 28, 2018 at 6:53am

Bloomingdalekid you look so beautiful!  Thank you for sharing and oh yes, as a braces kid too the comparison to getting them tightened is right on! Funny how that feeling from decades ago can come right back haha :-D

Comment by Halfbakedwho on November 28, 2018 at 4:29am

Bloomingdale kid - your comments about getting used to it (like braces) and getting the Brazilian hair straightening made me so crazy-happy! I will explain- 

I am an orthondontist’s daughter - I was also a braces guinea pig for years. So somehow that just clicked for me. My inner braces-kid was very comforted. 

And - I really loved my hair when I got it smoothed down with the Brazilian straightening - which I don’t do anymore as per my dermatologist’s advice to try to keep my hair on my head. When this is no longer an issue - when it’s « hopeless » (ha!) then I can at least get what’s left looking smooth and nice! 

Then of course... I am worried for the reasons CurlyK brought up... I too tend to be an itchy person. Could you be developping an allergy to the glue or to the latex? Maybe a switch is in order. 

 

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