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Comment by Liz on March 5, 2013 at 2:36am

Celia. Sounds lovely. Enjoy Abu Dhabi! Alice. I'm going with your theories, they sound cool!! Perhaps I shall discuss them with Dr Harries ;o)
xx

Comment by Alice on March 4, 2013 at 11:33am

Lest we take ourselves too seriously, I have 2 new theories about FFA:
(1) One is based upon the sci-fi series "Dune" by Frank Herbert. We are all turning into powerful priestesses called Bene Gesserit. Somehow, we've been getting the drug melange in our diets, which gives us superhuman mental abilities but also causes our hair and eyebrows to fall out. See http://en.wikipedia.org/wiki/Bene_Gesserit
(2) The other is based upon the ancient science of Physiognomy, which claims that a high, wide forehead is a sign of intelligence and open-mindness. See http://ssdivining.homestead.com/Physiognomy.html
Both of these theories suggest that we are all evolving into smarter and more powerful women. Unfortunately, neither of these theories accounts for the bumps and itching. But I'm working on it.

Comment by Simone NJ USA on March 3, 2013 at 10:20pm

Hi Liz::

Good luck on your appointment..let us know how it goes...x

Comment by Liz on March 3, 2013 at 6:29am

Hi Simone. Im not sure that I was taking them long enough to know either way. I was prescribed 8 weeks worth of medication and I took 5 weeks worth. I wasnt given another appointment until this June which means that there would be 9 months between appointments anyway. Who knows! Im off to see Dr Harries in a couple of weeks so hopefully he'll be a bit nicer than the doctor I saw. I dont even care if he does nothing for me just so long as he is nice :o)
x

Comment by Simone NJ USA on March 2, 2013 at 5:46pm

Hi Liz:

I'm sorry about the more hairloss...question... Do you think maybe once taking these meds then suddenly deciding to stop may have caused the hair to regress?

Comment by Simone NJ USA on March 2, 2013 at 5:20pm

Also:great Alice about the eyebrows..Jules, you commented that your FFA stopped for 8 years. When did it start again and if it has..what are you taking?

Comment by Simone NJ USA on March 2, 2013 at 5:18pm

Hi everyone:

I haven't been on the forum for a week now and am just catching up..thanks Debs for your advice on the wig.. Welcome Caro...

Comment by Debs on March 2, 2013 at 1:38pm

Liz, 'yes' my nails are different now. I had not noticed until I saw Dr Harries last Friday, he looked at my hands and asked if my nails had always had ridges, I hadn't noticed them before as it isn't very pronounced. I have since looked at the CARF website again and there are photos of finger nails with ridges running top to bottom for people with lichen planopilaris - and FFA is a variant of LP. My nails are strong and always have been so the ridges are a sign of my FFA but don't bother me. My eyebrows have not lost any more hair for over a year, I do have semi-permenant makeup on them but I can still see/feel my eyebrow hair and it hasn't grown back but has not shed since about November 2011 and I have not applied any creams to it.

Jules, are you also on the hydroxychloroquine sulphate?

Comment by Caro UK on March 2, 2013 at 12:32pm

Hi Liz, my fingernails are OK. No ridging, though some of my toemails are slightly discoloured and one is thickened but they've been like that for some years. I forgot to mention this to Dr Rajar. I had a look at some images on line which looked a bit like my toenails, though mine are not nearly as bad as some of the photos. I went to my GP to get my prescription for the meds and asked her to look at my toenails. Asked her if it could be Lichen planus? She didn't think so but said she would have clippings tested for ?fungal infection. Alice that's great news that your eyebrows are growing back!

Comment by Alice on March 2, 2013 at 8:38am

My nails are very weak. I keep them very short because they peel and split so badly. I've been taking Biotin supplements and using paint-on nail hardeners, all to no avail.
I've been using Elidel on my eyebrows for months and most of the hair there has grown back. I tried using it along the hairline but haven't noticed any difference there.

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