Comment

Comment by Susanne on February 15, 2013 at 11:38pm

Stacy - I have totally given up gluten. Honestly, I just don't think it's that hard, although my husband does make the best bread and pizza in town. I like to cook, so that makes it a bit easier for me. I've had enough benefits from doing so over the past month that even if it doesn't stop this FFA thing, I'm going to continue with it. It feels like I've been put on an anti-depressant. I'm still upset by it, but haven't been very depressed or sobby about it. It seemed to really be helping - my derm noticed the difference - but then the past few days I've had a bit of a flare-up.

Comment by Lorn. New York, USA on February 15, 2013 at 10:48pm

Hi Simone. I have been on these drugs since this past July. I am on them all at the same time but the clobetasoltopical topical solution about four times a week. I have noticed that the hair loss has slowed down and I believe I have some growth on the side of my head. I think that my hair loss has progressed slowly for years but due to stress in the past year I feel like it has flared up. I also noticed that I am getting some facial hair back. I do feel like my skin has thinned a lot and my veins are prominent on my forehead which I think is a side effect of the medicine. I was concerned about being on placquenel but the eye doctor told me his mother has been on it for years and she is fine. I am not happy about being on all of these drugs but I think they are worth a shot. I truly understand peoples misgivings because there is no guarantee. One drawback to being on all these meds is that it is hard to pin point what is the most effective. I am thinking it is the shots. But that's a guess. This is truly a trying disease and upsetting because I feel like no one can seem to predict when it will burn itself out.

Comment by PamW San Diego, CA, USA on February 15, 2013 at 7:59pm

Susanne, my understanding is that the biopsy does show LPP and the FFA diagnosis comes from where the pattern of balding is. If the biopsy shows lymphocyte infiltration that means LPP. Some people who have LPP have hair loss in other areas besides the temples and front hairline. FFA is a pattern of balding that includes the eyebrows, front hairline and temples, but there is physical evidence. It is most common in post menopausal women. There are men with LPP.

I am not worried about taking plaquenil. All of my doctors told me that it is a medicine that has been around for a long time, and people stay on it a long time. I worry more about putting clobetasol foam on my scalp three times a week.

We are all just diagnosed, and I think we will all adjust - we just don't have a choice.

Comment by AC from CA, USA on February 15, 2013 at 6:05pm

Clarification (I need spell check!)-- I've not taken synthetic hormones for nearly two decades...

Comment by AC from CA, USA on February 15, 2013 at 6:03pm

Hi Ladies,

Following the recent comments today-- my issues started in my late thrities and DEFINITELY are triggered by hormonal influences. My most recent inflammation event last week was associated with onset of my period and a good dose of simultaneous external job stress.

I am not being treated yet for my FFA and am considering whether I want to do so, even though I am desperately unhappy with the idea of further balding or wearing a wig-- which are clearly the two possible inevitabilities for me.

Looking for the lesser of evils--I am wondering-- has anyone tried using synthetic birth control hormones (pill, shots, etc) to both level their hormones and actually suppress their periods as a way of slowing the hair loss? If there was a shot in the dark for that to work, I think I would be more open to that than the other treatments.
I got taken synthetic hormones almost two decades ago. Is anyone actually on any syntehtic hormones and still experiencing this problem?

Thanks,

Aimee

Comment by Stacey on February 15, 2013 at 4:03pm

Thanks Susanne, I've noticed increased activity during my period, yes I'm only 34 but was wondering in this coincide with early menopause. I havent lost much yet just alot of thinning on both sides and around the hairline. Have you given up Gluten altogether? I have started to drastically reduce my intake of gluten but think it would be hard to totally block it out. I also had a breast cancer scare last year which needed a biopsy- again I believe this is probably again down to hormone imbalance.

Comment by Susanne on February 15, 2013 at 3:25pm

Jules - That's interesting about the melanoma. They got mine just in time so I didn't have to have anything beyond a wide excision and sentinal node biopsy, which was negative, thank goodness. It's another thing that takes you for a wild ride in your head, isn't it? I'm going to tell my onc about this the next time I see him. He does research with Melanoma, as does my dermatologist. I'm guessing our immune system is somehow to blame for it all. I teach at university and am also concerned about being in front of people. The whole scarf look doesn't really suite my style. Maybe I'll become more of a hippie, then I can wear the scarf. Nah. Probably just a wig. Alice, I'm so glad your husband is supportive.
Stacy, I have had visible little sores but none since I got off gluten. Still the past few days I've had itching and some sore spots. It seems to gear up a bit right before my period. Yes - I am still getting that, but I can't imagine that's going to go on much longer. So I think hormones are at play as well. I think FFA is just used as a catch-all to describe the fact that the hairline is receding. They do biopsies, but there is no result which says "this is FFA". It's purely a description of what's happening.

Comment by Stacey on February 15, 2013 at 1:58pm

Sorry- I feel bad not being diagnosed but its so frustrating just being fobbed off and then having to wait for appointments to come through whilst your hair and scalp is constantly changing. I feel like Im having a bad week. My scalp was so sore on Tuesday I couldnt put a hood up. Its better now but still has a very sore spot, my husband says it looks like a raised lump redder than the rest of my scalp. I can't really see it.

My question to those diagnosed with LLP or FFA what are your symptoms? Do you get visible sores? My latest one is 1cm into my hairline, My loss initally started after a sore about 18 months ago in the temple area and although my hair has thinned since I've not been overly aware of anymore spots.

I currently am prescribed bettamousse and betnovate scalp but planning a docs appointment to ask for more help maybe clobetasol instead.

Comment by Alice on February 15, 2013 at 12:13pm

Like you Susanne, most of my friends know about my FFA. My husband is very supportive. Even though he was going bald at age 30, when I married him, it never seemed to bother him at all.

Ellen, what is the medication used for FM that they are trying for FFA? I've had FM for years but don't take any meds, just getting by w/ lots of rest, yoga and a Jacuzzi tub.

Here's my thought for the day:
I don't have bad hair days.
Every day I still have hair is a good day.

Comment by Heidi Short UK on February 15, 2013 at 11:04am

Sorry I've just realised I have commented to yesterdays news not todays! Anybody else suffering from a lack of brain!!!X

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