Comment

Comment by Heidi Short UK on April 29, 2013 at 3:24pm

Thanks for the clarification Debs!
Celia its funny you should say that about a high profile person. I was watching E News this weekend ( American show biz program!) and they were talking about a Reba Mcintire, a famous country singer and they showed a picture and I immediately thought she looks like she has FFA, I don't know if she has or not but it did make me sit up and have a second look. I did go on the internet to investigate but there wasn't anything, not that I want the poor women to suffer from it but I did think it would be great if someone famous could front our cause!

Comment by Celia on April 29, 2013 at 12:44pm

Hello Debs, Liz, Heidi Jules Caro, Paula hopefully I hope to see soon. I hope the day will be good. Well we shall MAKE it good ! Bring some walking boots/trainers......and we'll get some fresh air - hopefully 3 days later - we will all be cured ! Liz - every time I wash my hair and dry it - the sun is shining through the window (well if it does !) and I can see hair falling. I will ask Dr H if that hair gets replaced or not - but I expect the response will be - not enough evidence to make a judgement. Oh dear. I think it must be a very difficult job for him to see so many ladies with this prob and not to know the answer. But I guess his day must be bespattered with folk with other derm probs.......I have said before - if a really high profile person developed this FFA prob - it would maybe get solved sooner. X

Comment by Debs on April 29, 2013 at 10:10am

Heidi

HYDROXYCHLOROQUINE sulphate is an anti malarial
DOXYCYCLINE is a tetracycline antibiotic

They are 2 different drugs

Comment by Heidi Short UK on April 29, 2013 at 9:55am

Hi everyone, thanks for the article Pam, looks interesting. Hope everyone is ok, looking forward to seeing some of you in a couple of weeks. Celia and Liz, when you say you are no longer taking doxy do you mean hydroxychloroquine sulphate or is this a different drug? i'm getting confused!
Is anyone suffering from a sore mouth and tongue, I don't know if its to do with the problem I have with itching salivary gland or its something else.
Liz I hope you are feeling better , I've been thinking of you today, keep your chin up, its hard when your appointments keep changing, but it will be worth it when you do get there. I wonder what he will perscribe you instead.It will be great to talk when we all get together at Celia's.
My sister went to an new salons open day last week, and they had a Halo Elite which uses a laser light to strengthen the follicle so they produce thicker healthier hair for people who have a problem with thinning hair, is this the laser treatment that ther was discussions about a few weeks ago. I might go for a free consultation1!

Comment by Celia on April 29, 2013 at 5:02am

Hi Liz - I was due to see DR H back in March - 21st - I got a message saying my apt was cancelled. A while later I was given one for the 2nd May - - 6 weeks later - I asked Jean Brock why the appt was changed and she said Dr H was going on holiday. Sorry you seem to have been messed about - to change it 4 times when they must know you are travelling a distance is not good, but we have to do as we are told I guess ! I am not taking the doxy any more either, just a handful of vits and turmeric.........

Comment by PamW San Diego, CA, USA on April 28, 2013 at 6:52pm

Judy, check your email. I contacted you.

Comment by Debs on April 28, 2013 at 6:40pm

Rebecca

Dr Harries has seen women with hair ranging between 2cm and 8cm. You can't tell how much you will lose until it stops.

Comment by Liz on April 28, 2013 at 3:10pm

Hi. Hope everyone is having a good weekend.
I've taken myself off both the Doxycycline and Regaine. Both were making me feel ill. Perhaps I have a low tolerance for medication but the Doxycycline was making me feel stressed, giving me ear problems and neverending thrush and the Regaine was making my eyes burn. I'm now dosing myself up on Piriton to try and help. I have started to feel better the past 2 days thankfully.
I'm losing more hair and feeling very sorry for myself. My son said that it looks like a scar where the hair has gone :o(
Has anyone else who sees Dr Harries had thier appointments changed? I've had my June appointment changed 4 times so far. I'm wary of booking train tickets incase it gets changed again.
xx

Comment by Simone NJ USA on April 27, 2013 at 9:42pm

Hi Celia:

Wondering if you could ask Dr. Harries if he were to do any DNA testing on mother/daughter with FFA what would he look for and what sort of guidelines would a doctor follow or what to look for really to pinpont when doing this test as I asked my Derm if it could done, but she said it's such an unknown disease that doctors would not know what to look for?? Also, how soon does he plan on conducting such a test...


Thanks...I would really appreciate it...

Comment by Judy on April 27, 2013 at 8:01pm

Hi ladies. I just finished reading the week's posts. Thank you
Pam and AC for the excellent websites. I will read them tonight.
Interesting. I have been taking strong doses of NSAIDS (anti-imflamatories), for many years as have bad Osteoarthritis - this is not an autoimmune disease like Rhuematoid. But that is why I take any anti-inflamatories that I hear about. The Tumeric I started only 3 months ago - but I have NOT had any inflamation with FFA since then. I also take Ginger and a small amount of some of the other herbs mentioned, plus probiotics.
I recently changed family doctor for various reasons, but because of that, I have learned about several problems I have that I would have NEVER guessed - wonder if they have any relation to FFA? I will mention them in case they may be helpful to anyone. One is severe sleep apenea and one is low cholestrol (way below the minimum) - both of these are fixable but I wonder if they could have any relationship to FFA?
Once I asked my dermatologist why the severeness of my FFA seemed to be getting so much better. I wonder if it is my NSAIDS? Is anyone else taking them? They perscribe them for pain (wihich reduces inflamation in the joints). Curious but I don't know enough to make any assumptions.
Pam what do you think? Also, please check out my April 15 posting for new email address so we can arrange a get-together.

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