Frontal Fibrosing Alopecia

Information

Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 333
Latest Activity: 20 hours ago

Discussion Forum

Newly "diagnosed" and struggling

Started by CurlyK. Last reply by DeniseC 20 hours ago. 8 Replies

Hi there. I've been struggling with a receding hairline and hair loss for about 3 years now. I've run the gamut of testing and tried all sorts of products, LLT, etc. After the last 3 months of trying products from a European doc that didn't work, he…Continue

2016 CARF Conference Information/Summary/Discussion

Started by SJC. Last reply by sammi yesterday. 31 Replies

Hi All,I'm back from the CARF conference and thought I'd get a post going to share what was learned/presented and start discussion about the same.  I didn't get a chance to meet either Nancy or Sally  from this group unfortunately.  I'm sure each…Continue

Article regarding FFA in children

Started by Isabel yesterday. 0 Replies

I found an article in French that reports three cases of pediatric FFA, including 2 twin girls, aged 14, and a 7-year old.In the discussion the authors believe that the twin girls case suggest a strong genetic causality for the condition and also…Continue

My FFA is in remission

Started by Robin. Last reply by BBQueen Jun 17. 9 Replies

Hi, I went to the Dermalologist today after 7 months on finasteride and clobestasol and a paleo autoimmune diet. There is no more redness or indication of the FFA and I am growing back hair in a few places. He was very pleased and believes that the…Continue

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Kikibob on June 17, 2016 at 5:56pm

MJ... I think we all have a combo of individual contributing factors... but it interests me to know that you also stopped tamoxifen, had tamoxifen induced menopause and then FFA.  That was my situation too.  At first I thought it was only loss of my eyebrows and I attributed it to the tamoxifen.  Maybe someday there will be a study about any linkage to FFA and tamoxifen.

Comment by Montymom on June 15, 2016 at 10:59pm
I am just catching on to this thread. I was diagnosed about 6 months ago. I too have recently switched from microbead facial wash to something more natural. Switching shampoos to sulfate free has also helped. I had shingles, but it was about 8 years ago (in my late 30s). I am also "allergic" to sunscreen which makes me crazy itchy. Those 3 are all commonalities I have!
Comment by Mel on June 15, 2016 at 1:12pm
Thank you, DeniseC. My mouth has been killing me for days but I also bit my cheek so I can't tell what's what. But notice some other small red bumps and now a weird hard bump on the roof of my mouth. Slept nine hours last night because I've been tired for days. When I get tired I notice the hairline looks worse. Trying to rest!!!!
Work stress plus too much bad news. May need to go on a "digital diet" to step away from all the bad news in our country and the world which I think adds a low level of stress. Let's all try to take good care of ourselves through diet, chemical free products, but also emotionally!
Comment by MJ on June 15, 2016 at 5:44am
I am not convinced of the sunscreen link. I only have an SPS of 15 that is in my foundation. I am not in the sun much overall so was only an occasional user of sunscreen on the body on vacation or long periods in the sun. I believe my trigger was a huge inflammatory response to a drug trial I was in, which caused a lot of pain anguish and stress. That followed by a huge amount of stress due to my mom's surgical complication and care. All during huge hormone fluctuations as I was raging into menopause due to stopping the breast cancer drug tamoxifen cold. Also, i would wonder if toxins from Facial chemical peels or retinol products or facial scrubs had something to do with it as well.
MJ
Comment by DeniseC on June 15, 2016 at 3:18am

mel

A quick response as I am (as ever) dashing out! I had oral lichen planus, which is what I was first diagnosed with. VERY sore mouth and upper throat, small blister-like spots that would pop up and disappear, and (this is where the name comes from) white striata that looks like lichen. However, it was the soreness that I had most - it was chronic. I couldn't use toothpaste or eat anything remotely spicy.

And it was that, that was diagnosed initially as shingles.

Denise

Comment by DW on June 14, 2016 at 11:55pm
I also had shingles - in my early thirties. It's looking like it may be a common thread. I am also devoid of hair on my legs (the only positive of this disease). Come to think of it, I didn't use sunscreen very often on my legs either. Religiously on my face, but not so frequently on my legs.
Comment by Mel on June 14, 2016 at 10:48pm
I was also diagnosed with shingles, but the doc did lab work to confirm so guessing it really was/is shingles? I still have mild symptoms years later. And this week I'm having mouth sores so hopefully it is nothing and passes quick... I will have to look up lichen planus.
Comment by cubbieblue on June 14, 2016 at 10:38pm

Hello GeminiJeanne, I  experienced hot flashes and sweating prior to my diagnosis at age 54.  However I was in menopause during that time, and also was diagnosed with breast cancer six months after my FFA diagnosis, so I really don't know which of those three things were responsible for the extra heat.  The sweating was much worse than the hot flashes.  I have not had shingles [knock on wood].  I find the possible link to sunscreen interesting, but I lost the hair on my legs too, and I don't really use sunscreen on my legs that often.

Comment by DeniseC on June 14, 2016 at 6:25pm

Hi GeminiJeanne

First - welcome to the forum. I have found it really useful, both as a source of information and also (perhaps more importantly) as a support. FFA can be a very isolating condition - it may not be life threatening and I know there are far worse things we could have, but still it is a very difficult thing to accept.

If you have time, scan through the comments across the FFA site - lots of different discussions.

I am 65. No hot flushes (I am pleased to say) but I did start getting excessive sweating on my head some time ago. Before I got an intralace system fitted (WONDERFUL!!) it was something I dreaded as of course the sweat made my carefully arranged hair all lank and damp. So the hair loss really showed, as did the sweat! Nice.

Whether the sweating is anything to do with the FFA I really do not know, but I certainly did not have it until a few years ago.

I have had shingles - about 12 year ago maybe. No idea whether it tied in with losing my hair.

But I did have lichen planus, which initially was incorrectly diagnosed as shingles in my mouth and throat - and that condition is definitely linked to FFA.

It feels, to me, like trying to put together a jigsaw when no one really knows what the pieces are. Only last week someone wrote on this site about a horrible rash on her forehead and it was a lightbulb moment for me, as I too had that before I got the hair loss. I am now convinced the two are linked.

But as to what else is linked, who knows?

One thing for sure, though - it almost certainly is environmental, as there was no record of it at all until the 1990s apparently. And research shows a link with sunscreen - or products, such as face cream with SPF. So I have stopped them.

Not a good thing to have - but we could have worse!

Keep smiling.

Denise

Comment by GEMINIJEANNE on June 14, 2016 at 12:21pm

Hi - i am new to this forum. I was diagnosed almost 4 years ago with FFA and have been trialing different medications since. This past month I was started on Paquenil by my dermatologist after getting testing done on my eyes . I am hopeful this will help stop the hair loss as at this point if I lose  any more , I will have to consider a wig. 

This disease is very disturbing especially for women and since in my family , we all have ( had in my case ) very thick and beautiful hair , I find it even harder to accept.

I would love to have discussions with anyone who is experiencing alot of hot flashes and sweating as well . My doctor says it's menopausal but i am 70 yrs old and starting menopause at 49 with a hysterectomy so this doesn't really make sense to me . Also , I would like to know how many of you out there have had shingles in the past few years and if maybe that led up to thi s??? Just asking many questions to be sure because this is such a little understood disease. 

 

Members (333)

 
 
 

Badge

Loading…

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

AlopeciaWorld.com: It's hair loss support at its best!

© 2016   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service