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Comment by Jules UK on July 2, 2013 at 1:53pm

Hi all, I've just been catching up on posts. Somehow I managed to switch off email alerts..... So welcome to our new ladies.
Re focus group with Dr Harries, there's a meeting in August and he's sent me a 75 page document to read, so I'll make a start on that tomorrow. It seems to be about the protocol of patient/clinician partnerships.
Still taking turmeric and plaquenil. My strategy for dealing with this at the moment is "head in the sand". I try not to look :) it's helping me to forget and get on with things. Hope it doesn't sound to dismissive. X

Comment by Liz on July 2, 2013 at 12:39pm

Hi Celia
I dont think that I shall go back to Salford.I'm just going to let my body do what it needs to do. I considered Avodart but its a strong drug with side effects and never designed for the hairloss that we have so I'm not going to take it. A drug which treats FFA specifically needs to be formulated and then I'll consider it.Maybe if we keep agreeing to take prostate and malaria drugs no specific drug will be designed. After all we are only women and as women we are used to being fobbed off (cynical me talking :o)) xx

Comment by Celia on July 2, 2013 at 9:20am

Liz - as far as I was aware - Avodart was an option which apparently is increasing in 'popularity'. There was no mention of cost. When do you go back to Salford ? I would really like to know some stats as to the effectiveness of these treatments. I asked about the questionnaire that some of us completed - apparently it is with a derm in Sheffield who is considering the implications.

Comment by Liz on July 1, 2013 at 7:00pm

Celia. When Dr Harries mentioned Avodart did he say that he would consider prescribing it to you? My derm prescribed it but I was told that it is a private prescription only drug and therefore costs about £210 for 6 months supply.

Comment by christiekd on July 1, 2013 at 6:04pm

Thank you, Annie, for the helpful hints. I use Rogaine (men's) as well on my hairline as well as my eyebrows. I think it works wonders too. Also, using self-tanner is a great idea. Plus, remember to use sunscreen as this part has probably not been as exposed to the sun as the rest of the face.

Also, I can't stress enough to find a really good hairdresser. They can do wonders. My hairdresser told me that she has uniquely cut women's hair who hardly have any at all and she does a really good job. You can hardly tell. She does wonders with my hair and said she could even help me if I lose more around my face. So be honest with your hairdresser. They really can work magic and have seen a lot of different kinds of hair problems.

Comment by Annie on July 1, 2013 at 5:54pm

Hi Everyone,
My name is Annie. I live in Missouri, USA. I was diagnosed with FFA on March 14. I have been to three doctors (None have previously treated FFA.), and finally got a prescription for hydroxychloroquine on June 21. It has taken me three months to read through all your comments, and I have learned a great deal. I haven't posted anything before now because I honestly didn't feel like I had anything beneficial to share with you. I'm not far enough into this disease to offer any medical advice, but I do have a couple simple tips that have helped me adjust to looking at myself in the mirror these days. First, my latest (and favorite) derm started me on men's Rogaine (5%) on my first visit 2.5 months ago. This has worked wonders. I have regrown a lot of the fringe around my face, which helps hide the bare spots. I also use it on my eyebrows, which haven't been affected yet. They are thicker than they have been in years! An unexpected bonus is that my eyelashes have gotten longer and thicker than ever before. I do have to warn you that the Rogaine made me shed more than usual about 2 weeks after I started using it. The shedding usually lasts about 6 weeks, which can be scary. My second tip is to use self tanner on the light areas around the face where the hair no longer grows. I use Jergen's oil-free for faces which is less than $10 at drugs stores here in the US. I no longer have to look at the white band that was a constant reminder of where my hairline used to be.
I want you all to know that I have appreciated reading your comments, and how amazing I think you all are.

Comment by Celia on July 1, 2013 at 1:52pm

My meeting with Dr Harries last Thursday............I am continuing with the hydroxychloroquine until I see him again in 4 months time. There are still more questions than answers. I find the time I have to sit in a room after being called through from the waiting room quite a difficult time but I guess this is their way of dealing with patients. I saw Dr Harries' registar for about 10 minutes and told him that I continue to lose hair and possibly more so since the med, but that the inflammation on the hairline is less - I put that down to turmeric I think...... He said he felt I was showing signs of anxiety. I waited a while until Dr Harries came in and had a discussion about the usual - triggers for this condition. I said I had read the leaflet regarding Avodart which is the drug used to treat males with enlarged prostate, and that I wouldn't wish to have that one although he said it is increasing in use for the FFA condition. I wonder, Debs when you next see Dr H if you would ask about the stats on success rate using this drug.
Alice - I agree with your comment on the affluent women aspect of FFA. XX

Comment by ElleMN, USA on June 30, 2013 at 9:19pm

Just wondering if anyone has had success with acupuncture?

Comment by Debs on June 27, 2013 at 2:20pm

Hi Rita, it does not look like I am wearing eyeline, it looks like I have more eyelashes than I actually have. The eyelash enhancement is much finer and the pigment is placed in eyelash line so it isn't noticeable and ideal to disguise hair loss. There will be practitioners in a major city like Toronto, I would check out wwww.heralopecia.com and ask the ladies on there if they can recommend anyone near you. It is a real art to do this so you do need to find a real pro. XXX

Comment by Rita - Canada on June 27, 2013 at 11:37am

Debs, What a wonderful idea for eyeliner. As you say, you must have a super professional to apply & I wouldn't know where to start as I am north of Toronto,Canada. If anyone else has had it done with success, please let me know. My sis had her eyebrows done some years ago but they are rather just too bold in color but she did choose it.

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