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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.

Comment by Anne Louise on April 29, 2014 at 10:19am

Thanks Kath. I am grateful to have this forum to share my frustrations, as I know nobody else gets it like you ladies. My dermatology visit yesterday was rather uneventful, but at least it wasn't cancelled! For now I will continue with the Clobex, Minocycline and Plaquenil and see him in 3 months. I did ask him his thoughts about using probiotics and he wasn't opposed and said they may be helpful in protecting against yeast infections while on minocycline. I then started to blabber about my theory and how probiotics can do so much more, I mumbled about PPARgamma and a case study of a guy with LPP; he nodded and remarked that I've clearly done a lot of reading up on FFA. It just wasn't the place to launch into a presentation as the appointments are so time limited. I'm thinking of writing up a summary of my findings and then mailing it to him...I would love to see more research done on probiotic use for non-GI autoimmune diseases. Of course I'm very busy with my 7,6 and 4 year olds but it is a goal of mine. If nothing else it will synthesize for me all the research studies I've been reading, and if it compelling enough perhaps it is something that can be shared with other dermatologists.

I will let you all know how the tattoo goes tomorrow and if I'm brave enough I may even post some pictures!

Comment by Kath UK on April 29, 2014 at 5:30am

Anne - I'm so sorry you had a wasted journey and felt so fed up.  What a drag for you.    Please will you let me know how the eyebrow tattooing goes?  I'm thinking about it but have yet to find anyone good near where I live. 

Oh ..... and I love your upside down photo. Always makes me giggle.

Comment by April on April 28, 2014 at 12:08pm

Anne, sorry about your experience with the support group!  So disappointing.  Good luckw with your eyebrow tattoos, I'm sure you will be really pleased!

Comment by Anne Louise on April 27, 2014 at 6:29pm

And yes, Celia, I have a notebook I've started that I brought with me. I continue to collect info and maybe something will come of it all.

Comment by Anne Louise on April 27, 2014 at 6:28pm

Thanks Anne and Celia for your encouragement. Maybe I should change my name to Upside Down Anne since I can't seem to change my picture! At least it gives us all a good laugh and reminds me to keep my chin up. Derm tomorrow and tatto Wednesday; I plan to confirm both appointments!

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