Comment

Comment by Caro UK on February 26, 2013 at 6:12am

I've just joined Celia's group. I've also been prescribed Hydroxcloroquine 200mgs but only once a day. Worried that this may not be enough to be effective.

Comment by Debs on February 26, 2013 at 5:55am

Rebecca, Dr Harries has told me to take 200mg twice a day to begin with, I know there are other ladies taking it twice a day and some just once. Rebecca are you also taking the doxycycline ?? and having steriod injections into scalp?? Liz, you don't know if the meds are making the FFA slow down/stop or if it would have done so anyway if you did nothing. This is one of the many problems with FFA and why it is so hard for derms to treat because getting evidence of meds that works really is tricky.

Comment by Heidi Short UK on February 25, 2013 at 3:35pm

I would like to meet up too Celia I would need some notice so that I could take time off work. I would probably come up by coach as its a long day up and back on your own driving. It would be great to all get together, we could be ladies that lunch!!

Comment by Kath UK on February 25, 2013 at 12:53pm

Good luck with plaquenil, Rebecca. I'd be interested to know how you get on with it as I have to see my dermatologist next week and if it is now a recognised treatment she might suggest it for me. I'm a terrible coward about taking medication, I'm afraid. I always worry about possible side-effects.

Comment by Liz on February 25, 2013 at 8:14am

Hi Alice. I dont do it very often because it makes me shudder but every few months I pull on some hair around the hairline (about 30/40 strands). If it falls out without any effort or pain I assume that my condition is still active.
x

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.

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