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Comment by Judy on April 11, 2013 at 8:35pm

Judy from San Diego
Hi ladies,
I am way behind in reading all the posts. Playing catch-up after
returning home. Yes, Pam, I am home and would love to meet up with you. My email is jkeller@aol.com.

Comment by Bernadette on April 11, 2013 at 7:18pm

Hello everyone. I get my biopsy results on Tuesday but the dermatologist is almost certain I have FFA. I cried for 3 days after my first visit with the dermatologist. I had a complete hysterectomy 10 years ago and initially I thought the symptoms were all related to menopause. Right now I am wearing a hair weave and I have eyelash extensions. My brows are sparse but recently have started to grow back which is totally inconsistent with the FFA diagnosis, but I will take whatever I can get at this point!! I have an appointment with Joseph Paris in NYC for a wig consultation next week. If anyone has a Joseph Paris wig please tell me about your experience.

Comment by Caro UK on April 11, 2013 at 10:49am

Hi Simone, I've just had my eyebrows tattooed! I'd say go for it! But please make sure you go to someone who is very experienced. I have one eyebrow with hardly any hair left and the other has about a third left. There won't a problem having them done. An expert in medical tattooing (from Nouveau Contour) has done a brilliant job and I am thrilled with the results. I now feel as though I have my features back. I need to return in a month's time for fine tuning the colour and shape of my new brows and then a third and final time. This is included in the cost. It should last for 1-3 years.
Good luck!

Comment by Simone NJ USA on April 11, 2013 at 9:47am

Hi Everyone:

I have a question for any of the ladies who have had their brows embroidered..I have one brow that's getting thinner and sparse than the other. I am wondering if it's better to wait till the other gets sparse to tattoo both or just go ahead & tattoo both now...not quite sure what to do...help!

Thanks...best wishes to all

Comment by Debs on April 11, 2013 at 4:08am

Paula, I agree 100% with Liz. I have to travel from London to Manchester to see Dr Harries but it is worth it for the reassurance that I get being treated by him.

Comment by Paula uk on April 10, 2013 at 12:00pm

Thanks Liz, just trying to figure out what I should do next.

Comment by Liz on April 10, 2013 at 9:31am

Hi Paula. I see Dr Harries every 3 months. I travel up from Brighton. I see him because he is the nicest consultant I have seen. Although he doesn't necessarly offer anything different from other consultants, he cares, is attentive and makes me feel that I am not been rushed. For me it is not just the information I am given on FFA that is important, it is the way that information is given.
x

Comment by Paula uk on April 10, 2013 at 7:35am

Hi Debs,
can I ask ,how often will you see Dr.Harries?Is it every 3 months or does it depend on the medication you take.
Also would you say that he is the leading consultant on FFA and one I should try get referred to rather than London based derm. Who specialises in hairloss ? X

Comment by Debs on April 10, 2013 at 2:42am

There must be an established best practice protocol for checking liver function in patients on plaquenil, it is not a new drug and people have been taking it for a number of years for other medical conditions. I have my second appointment next Friday with Dr Harries, I will chase it up my end too. Surely the drug manufacturers must give guidance on it's usage to the medical profession. I know that it is common to take palquenil for many years with other conditions, so I am not too concerned at taking it for the relatively short period that FFA requires. However, I do want to keep myself safe. On a lighter note, I have discovered 'buffs' I have ordered 4 off the internet and am going to use them in the gym and on the beach when I go on hols next month, they are so comfy and you can make them into headbands, bandanas and all sorts.

Comment by Robyn, Melb. Australia on April 9, 2013 at 7:21pm

Hi ladies,
I have been on Plaquenil 2 years and had liver function and other blood tests done by my specialist prior to going onto Plaquenil. I currently see her twice a year, have an eye test once a year but at this stage she hasn't repeated any blood tests although my GP generally has me do blood tests once a year as normal practice. I recall the specialist telling me originally that information she has read indicated impact on eyes generally only occurs after using Plaquenil for 5yrs or more - and even then that's not with everyone. I have an appointment in early May with her so I'll check then her thoughts about blood tests & eye tests again. As we have discussed before I think there is a lot of difference of opinion due to there not being much research to date for specialists to work with.

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