Comment

Comment by Stacey on February 17, 2013 at 3:35am

For those visiting Salford, If the travelodge you mention is near Old Trafford, there is also a Premier Inn there which has free parking. I was there a few weeks ago for something else and the Premier Inn rooms were really nice. Its on the other side of the water to the Hospital but looking at Google Maps it should be quite accessible. I dont have my appointment til April and only live 2 hrs away so wont need to stay over but this might help someone. PS it was easy to get to the trafford centre too for shopping!

Comment by Stacey on February 17, 2013 at 2:57am

My hairloss started whilst I was on an implant for birth control, i had that removed and was put on the pill- just a normal one probably not one of those recommended for hair loss. over the last two months whilst on the pill I have had whats felt like flare ups, more sensitive scalp, hair prone to breakage etc. I then came off the pill but this was only a few weeks ago and my flare ups are still there. Its very frustrating I have an appointment in 6 weeks so hopefully I will get a diagonsis then.

Comment by Heidi Short UK on February 16, 2013 at 4:43pm

I've lost hair on my legs, arms, eyebrows and hair line. I have noticed my eyes are dryer and don't water as much as they used too. My head doesn't itch its tender if i tap it by mistake with a hair brush.
I started my menopause when I was 43 and I'm not on HRT and that was the first thing I asked my derm but he said it wouldn't have made a difference, if I was on it or not!

Comment by AC from CA, USA on February 16, 2013 at 4:33pm

Rebecca- I'm just curious about whether anyone has noticed any influences to this disease related to the use of any birth control pills, or bioidentical hormones. In your experience, it sounds like the pill you started after the disease onset made no difference, correct?

Thx- A

Comment by Alice on February 16, 2013 at 9:46am

Pam, I also had a scalp biopsy that was + for LLP, but dx'd w/ FFA due to the pattern of hair loss.
I'm wondering what other hair loss others have noticed. A few years before I started losing hair on my brows & hairline, I had trouble w/ eyelashes falling out. An eye doc suggested using hot compresses over my eyes to unclog the follicles. I still have trouble w/ lashes falling out easily, but they grow back. My eyes are also very dry.
I've also lost all of the hair under my arms and most of the hair on my legs, which I am not sorry about. The hair on my forearms is much thinner. In fact the only place I don't seem to have lost any hair is where it doesn't show unless I am stark naked, if you know what I mean.
What other hair loss have you noticed besides brows & hairline?
Alice

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

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