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Comment by Mary on May 10, 2014 at 1:20pm

Been fairly recently diagnosed with FFA. Currently on anti malarial treatment and topical cream. Browsing the internet and found this site.

Comment by Celia on May 10, 2014 at 10:56am

Meme - welcome back.  These lengthy waits are too much sometimes.  I have had problems asking questions and then having to ring back and again and so on and just being fobbed off.  It's called being inefficient I think.

Anyway - glad your internet is back - what did we do without it for so many years ?

x

Comment by Meme on May 10, 2014 at 5:56am

C,

Hello everyone, I have been off line for a while thanks to a boy racer who decided to take out the telegraph pole up the road and leave us all without the internet...bless him. The joys of living in a Suffolk village.

I noticed C that you said your results had come back with low Zinc. I had that as well, in fact I can remember telling the ladies when we all met up about my trip to see Dr Chris at Guy’s and the blood tests he did that came back with low iron, Zinc and B12. They were taken back in February. When I got the results, I made an appointment to see my doctor but he was away so had to wait 4 weeks. When I did see him he insisted that I have the tests run again at my local hospital. Made another appointment to see doctor to discuss results and had to wait another 3 weeks. I was ready for a fight when I went in but finally on Tuesday he agreed that I need iron, zinc and B12 (had first B12 shot yesterday) but as I cannot absorb vitamins and minerals in my gut he is also sending me back to Guy’s to see a gut specialist. Phew!

Hope all are keeping chin’s up. 

meme

Comment by Annie on May 5, 2014 at 2:58pm

 April, I'm currently using Bethamethasone Dipropionate 5% topical.  I used Clobetesol for two months.  I think it helped with the inflammation, but it was extremely irritating to my scalp, so my doctor switched to the Bethamethasone.  It's a little oilier (plus more expensive), & not quite as irritating.  I definitely think that using a topical makes a big difference for me.  I saw my doctor for my one-month check-up after starting Plaquenil and mentioned that the Clobetesol irritated my scalp.  He said I didn't need to use  a topical since I had very little redness & inflammation.  When I saw him three months later, the ffa was much, much worse.  That's when he gave me a prescription for Bethamethasone.   

Comment by April on May 5, 2014 at 1:56pm

Annie, what topical are you using?

Comment by Annie on May 5, 2014 at 11:03am

Hi all, I just wanted to share that after 10 months of taking Plaquenil and using a topical on my hairline, I'm starting to see a noticeable difference in my hair loss. It has taken a long time, but I can definitely see a difference.  I used to find about 30 hairs on my bathroom counter when I dried my hair, but that number has gradually decreased to 10-12.  I know the ffa is still active, but I feel much more hopeful.   

Comment by Celia on April 30, 2014 at 3:47am

Anne L , thanks for the dermy update.  I laughed when you described your blabbering and mumbling !!!!! I have tended to do that in the past when there is so much I want to say and even though I have notes I rarely seem to get across what I want to say - until I have left the room it often is a bit of a blur.  Silly really when I think of the many meetings I have chaired in the past in my role in school and I could take notes as well as speak, then write it all up afterwards - no prob ! I feel that was a lifetime ago since then.  I made a second phone call 2 days ago to the derm I saw recently, asking for the notes from my appt with him in Feb - I last phoned 10 days ago and was promised by The Secretary that she would e mail my blood results and send the letter from the derm.  It wasn't until the second call that there was action ! I received not only 1 letter but 2, one dated Feb to the GP saying I was low on zinc and a second to the GP about my condition........this seems to happen so regularly, having to ask again and again for what I would expect to happen, having signed a form there to say yes to all correspondence being copied to me.  Moan moan, sorry ladies ! It promises to be a nice day here so I shall get out and enjoy it ! x

Comment by Classical Anne in NC mountains on April 29, 2014 at 1:36pm

Anne L, thank you so much for all the research you've been doing, filtered through your own training and experience in nursing.  I think that validates your efforts, where others of us might be ignored.  I whole-heartedly support your proposition to synthesize and summarize your findings, with a goal toward sharing with our dermatologists.  It's hard to imagine getting much done with your 7, 6, and 4 year olds, but you seem to have the energy, and clearly have the motivation and enthusiasm -- for which I think all of us are grateful.  You go, girl!

P.S. I will miss your chin-up photo, but it's always nice to get flowers, even electronically.

Many thanks & best wishes,

Anne S

Comment by Annie on April 29, 2014 at 11:06am

Anne Louise, I have had similar experiences with my doctor when I bring up different approaches to treating ffa.  I saw three derms before I found one aggressive enough to even put me on plaquenil.  (The first two recommended a topical & follow-up visit in 3-4 months.)  I love my current doctor, but he is skeptical when I mention something new I've researched on the internet.  He's always willing to let me try something that won't harm me, but quickly dismisses something that he thinks might do more harm than good.  I think most doctors want to prescribe tried & true treatments.  Unfortunately, there aren't a lot of those available in regards to ffa.    Good luck on your eyebrow tattoos!

Comment by Anne Louise on April 29, 2014 at 10:25am

Well look at this! I was able to replace my picture! I hope too many aren't disappointed with my removing my upside down head. I also added my middle name to help distinguish me from the other lovely Annes on this site.

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