Comment

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. 

Comment by CarolJ on June 10, 2016 at 7:47pm

That is so interesting about the face wash! There does seem to be some sort of a connection between products that we apply to our faces, whether it's sunscreen, facewash or makeup. They all contain chemicals and ingredients you can't pronounce. And the hairloss is just around our faces! I definitely think there's more to it but that sure seems to be a factor.

Comment by Mike'sDeb on June 10, 2016 at 7:24pm

Hi Ladies - Just a quick random thought about potential cause. Since my FFA appears to be inactive for sometime now I have been thinking about what changes I have made in my daily regimen that could have helped. I have already mentioned on this site that my dermatologist strongly thinks my cause was environmental. I have already mentioned my dietary and activity changes but as I was washing my face today I realized my face wash is different. I used to use a facial scrub that had those tiny plastic microbeads in it. These microbeads are no longer used in products due to their damage to the environment. It may be something to note my 23 year old son (who also was addicted to the squeaky clean microbead scrub feeling)has 2 nickel size areas of alopecia areata on either side of his face. You can only notice it if he hasn't shaved. Just something to toss out there!

Comment by Wyobalance on June 10, 2016 at 6:51pm

Otezla was discussed, briefly, but it is so new (for psoriasis), I don't think it has been tried much for FFA.  The conference was informative, but not much new info.  It was helpful for patients meeting others with the same condition, and hearing how they deal with it.

Comment by Wyobalance on June 1, 2016 at 10:51pm

Oh interesting, Gittan, I am attending the Carf conference and my first question is to ask if anyone is using (trying) Otezla.   I'll let you know what I find out.  And let us know how it works for you.

Comment by Gittan on June 1, 2016 at 4:40am

Me too envy you who can participate in the conference. As I live in Sweden it is too far to go. I had my diagnosis just two months ago. I find it helpful to read all your comments. My derm thinks the results of antibiotics and Plaquenil doesn't convince her it would help me. To reduce inflammation she has prescribed a new drug Otezla(apremilast), originally for patients with plaques from psoriasis to reduce inflammation activity. If you get some information on that sort of medication I would be happy for more information. It is an expensive drug, but in Sweden it is coverered by our health insurance system. Anyone else in the FFA network who has experience from this medication?

Comment by Marian on June 1, 2016 at 12:05am

I am so envious of all of you who are able to attend the CARF conference. Have a great time meeting each other, enjoy every minute and learn lots....then share the experience with the rest of us. Happy and safe travels, I hope to be meet you all at the next conference!

Comment by Wyobalance on May 31, 2016 at 11:41pm

Sally, I heard you were going.  Fun!

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