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Comment by Alice on February 25, 2013 at 7:51am

Comment by Alice on February 25, 2013 at 7:51am

This may sound like a stupid question but here goes: How does one know that FFA has stopped progressing? And for that matter, how does one know if a medication is working? Do the bumps along the hairline ever go away? I can tell if my scalp looks red or feels itchy but can't really tell what my hairline is doing from day to day. So, it's hard to judge what may or may not be helping.

Comment by Liz on February 25, 2013 at 7:24am

When I went to Trendco the hair pieces were far more expensive as they were 'bespoke'. They cost about £700.
Celia I am happy to travel to London :o)
xx

Comment by Debs on February 25, 2013 at 7:12am

Simone, if you can find a hair piece that is affordable for you then by all means wear that instead of a full wig, I feel more secure in a wig, that said I have never worn a hair peice so this is just my personal feelings, I would go to a wig shop and try both on, I find that in a full wig I can forget I have it on. This condition means that a full wig isn't necessary to cover up the hair loss but it is whatever you feel most relxed in. Try both and see and weigh up the costs.

Comment by Debs on February 25, 2013 at 7:07am

Celia it would be super if you could have a get together, it was great when we had a coffee back in November, I am up for that.
Jules, OMG I am astonished that your FFA stopped for 8 years after taking fucidin - yes, please do ask about that too. There are not many wigs that are designed to be slept in, you can sleep in a wig of course but you will find it does not last very long, there are some wigs that you wear non-stop for several weeks at a time (bonded full lace) they are available from online wig shops for about £200 and there are shops in London that sell them. I suggest you go on the www.wigsupport.com site and look at a recent post about sleeping in wigs.

Comment by Jules UK on February 25, 2013 at 6:35am

Celia, that sounds a lovely idea! I'm happy to travel to London and will drive anywhere. X

Comment by Jules UK on February 25, 2013 at 6:18am

Yes, of course. Is it helping her? When I had my first bout of FFA, but didn't know what it was, I had Fucidin for the inflammation. FFA the stopped for about 8 years. I'll ask about that too. By the way, do you know if there's a wig that you can sleep in?

Comment by Debs on February 25, 2013 at 6:07am

Jules, can you ask Dr Harries:
GRISEOFULVIN - antifungal is being used by Michelle in the USA with MINOCYCLINE ( minocycline is a tetracycline antibiotic like the doxycycline that is being used) what does he think of trying the antifungal?? I was so busy asking about gluten when I saw him last week I forgot to ask about the antifungal drug.

Comment by Jules UK on February 25, 2013 at 5:41am

Celia, I know dieting sounds a bit "kooky" but it seems that meds don't work and I'm willing to give it a try whilst I've still got some fringe to save! The fasting came from an edition of Horizon and shows how you can restrict production of a potentially harmful growth hormone. The Dr presenting was so convinced by the science, he converted to it too.
Www.bbc.co.uk/news/health/19112549
Interestingly, the same hormone was mentioned on the paleo diet website. I may be too weak willed but it looks a healthy way of eating. I'll miss cheese though!
Have a wonderful time - relax! And good luck with that finger. And I hope you don't have to wait too long for your next appt, this is the trouble with the NHS sometimes. X

Comment by Jules UK on February 25, 2013 at 3:59am

Celia, from what I've read here plus my own experience, I do agree with you. But it goes against the grain somewhat to just accept this without some struggle. I've decided against steroid injections if offered and still undecided about plaquenil. I'm going to try the paleo diet starting today (well, willpower permitting) in addition to the alternate day fasting. If I don't try, I'll never know whether it just might have helped.

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