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Comment by Chrisy, MA USA on May 3, 2013 at 2:05pm

Hi all! I was reading some other posts and another lady mentioned that she is taking biotin supplements and she saw improvement in her hair. Does anyone currently taking this? Shall we consider adding this on the list??

Comment by Debs on May 3, 2013 at 1:59pm

Hi Celia, so glad you had a productive visit up to Salford and that you have the hydroxychloroquine now. I have been taking it for about 8 weeks so it is still too early to now if it will work for me. Thank goodness the injections did not hurt as much this time round. XXX

Comment by Liz on May 3, 2013 at 11:54am

About 5 years ago I had a bad reaction to some cream. The skin on my face burnt and it took several weeks to recover. I looked up the ingrediants online and saw that that one had been banned by other cosmetic companies. The company I bought the creme from used a lot of this in many of there cosmetics. It's a well known company and me and my mum (both who have FFA)used thier products for years. I'm going to try and remember what the ingrediant is and look it up again.

Comment by ElleMN, USA on May 3, 2013 at 10:16am

I keep thinking this must have something to do with hormones, sebaceous glands, toxic lipids...these two articles appeared in our local paper this week and while I can't figure out how it all pertains to FFA, I do think they are interesting. The first one is on how a drop in estrogen effects fat cells, the second is on gold nano particles in cosmetics and how they get stuck in cells and can't get out...More food for thought...

http://www.startribune.com/lifestyle/health/205701571.html

http://www.startribune.com/lifestyle/health/205483331.html

Comment by Celia on May 3, 2013 at 3:49am

Good morning all. Got to Salford yesterday in 3 hours exactly. Had the injections again and they were not so painful, thankfully. Dr Harries sees women with different degrees of FFA. The difficulty with treating this condition is, in part that some meds work for some people and it seems to be as we know so unpredictable. With regard to DNA testing Dr Harries said that was really within the remit of those medics who specialize in that procedure. I have hydroxychloroquine but not very happy about taking meds anyway. I was expecting 2 months supply, 2 tabs per day 200mg each tab. However when I got home I saw that I only have 60 tabs. Have an appt. in 2 months time. Have to go back up next Tuesday so I will try to get the other 60 tabs..............My hairloss was measured as to the forehead loss and it was not significant since last November. One and a half cm seemingly although it seems more to me !
Has anyone on hydroxy.... felt that the condition has stabilised since starting the medication ?
Paula can you e mail me on this site so I can give you directions please ? As I said I cancelled the wrong bits on my profile last week so other people whom I have e mailed before are also not accessible at the moment.
So glad your meeting up went well to all of you across the water - I bet it was lovely to begin to get to know each other.
I'm looking forward to our get together here on the 15th !

Comment by PamW San Diego, CA, USA on May 2, 2013 at 10:37pm

Judy, thank you for the compliment. I think you are pretty remarkable. You have such a generous and warm spirit to reach out to a perfect stranger.

Karen, I am so happy that you went to another doctor. I think we are so lucky when we can find anyone who knows about this horrible and rare disease. Keep on asking questions. Who knows? Maybe one day someone will actually have an answer.

Comment by Judy on May 2, 2013 at 9:59pm

Hi from Judy in San Diego. Today Pam and I met - I must tell that Pam is really a beautiful woman, both inside and out. It was
such a pleasure to meet and so interesting to compare notes. We just could not figure out why she has the itching and inflamation which I do not have currently. Possibly it is just I am in remission for awhile. Incidently, her eyebrows are fabulous - too bad we can't all go to her tatoo lady. There was no doubt that we both have FFA. Lacy, we would love to meet up with you so next time why don't you arrange a time?

Comment by Simone NJ USA on May 1, 2013 at 5:08pm

Good luck tomorrow, Celia and thanks for taking the questions to Dr. Harries...

Comment by Celia on May 1, 2013 at 5:05pm

Debs - you are right I think - how can something like this affect only certain ethnic groups ? We are all made of skin and bone and - OK - if they believe this to be true (which I think is nonsensical) why then do they not do research to prove/disprove that theory ? I will ask tomorrow what we as a tiny group of ladies might do to advance the research. That questionnaire some of us completed.......I wonder what will be made of it ? I am most interested in what meds have been shown to work and on the profiles of people who have been treated successfully with meds. As far as I am aware - the treatments are hit or miss and it's difficult to determine whether any noticeable improvement is due to meds or whether any such improvements would have happened anyway due to lifestyle changes etc. Oh well off for an early night - early start tomorrow. x

Comment by Debs on May 1, 2013 at 3:03pm

CELIA, I wish you the very best of luck tomorrow with Dr Harries. As I only saw him a few weeks ago I don't have any questions for him. I hope you have a positive experience. XXX

KAREN, these derms do seem to have some odd ideas about FFA only affecting specific ethnic groups, Dr Harries thought that women of african origin did not get FFA... I told him that besides myself I know of 3 black women with it.... and now your derm thinks the opposite... I think that really is indicative of how little the medical profession seems to know about FFA and how little empirical research has been conducted until now. I am glad that you feel happier with this new derm and I hope you are able to find an effective treatment plan with them.

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