Comment

Comment by Jules UK on May 15, 2013 at 3:06pm

Yes, thank you Celia. You made us all feel so welcome! It was great to meet up with other ladies who have to put up with this FFA. And you all looked so good. X

Comment by Debs on May 15, 2013 at 2:19pm

Celia, thanks a million for your hospitality and a great get together today. It was lovely to meet up with you again and have the chance to meet some of the other ladies from the UK.

Comment by PamW San Diego, CA, USA on May 15, 2013 at 7:24am

I am sending a link to the latest CARF newsletter. This is the research organization for Cicatricial Alopecia. There are many interesting articles. If you are not a member, I urge you to contact the organization and register your name. It is free and private. The doctors have been calling this a rare disease, but more and more people are getting diagnosed. They are an international organization.

Here is the link.

http://www.carfintl.org/newsletters/carf-newsletter-2013-05-01.pdf

Comment by christiekd on May 14, 2013 at 8:23pm

Thanks Robyn for your good news. I think it is a good ideas as well to not let FFA take over our lives. Furthermore, I think trying not to stress too much over it (and other things) is important too. I am a very type A personality so it is hard for me sometimes to let the little things go. But I find that if I can roll with the punches, I don't get the burny, itchy feelings on my scalp so much. Plus, I try to remember that other people have medical conditions a lot worse than this. So I try to do a lot of positive thinking along the way. It can't hurt at least.

Comment by Debs on May 14, 2013 at 12:06pm

Robyn, thanks for keeping us all informed. Very good news that your FFA has calmed down and also very reassuring about the long term use of this drug. XX

Comment by Kath UK on May 14, 2013 at 9:40am

Hi Robyn. Thank you for your latest news. It's good to hear how others are getting on with their treatments. I hope you continue to make progress and the inflammation stays away.
My dermatologist didn't say anything about plaquenil taking 2 years to have an effect - in fact she couldn't say how long I would have to take it but she did say that over 50% of her patients have success with plaquenil. And she advised more frequent eye check-ups than once every five years - but there seems to be a lot of different opinions among dermatologists.
Anyway best of luck with your treatment. I think your specialist has a point when she said that she had decided not to let Alopecia take over her life. I'm working on that attitude too!

Comment by PamW San Diego, CA, USA on May 14, 2013 at 12:16am

Hi, Robyn. Thank you for sharing your good news! I never heard that it could take two years to see positive results from plaquenil. I will continue to be hopeful.

Comment by Robyn, Melb. Australia on May 14, 2013 at 12:07am

Hi ladies,
Just updating you on my visit to my specialist. She feels my condition hasn't moved greatly in the last 6 months and isn't currently active as she couldn't see any signs of inflammation around the hair folicles (not sure if that will remain or not), and she has reduced the Plaquenil to 1 tablet per day. I don't need to see her again for 12 mths (unless my condition changes). I have been 2 yrs on Plaquenil now and she says it can take up to 2 yrs to see positive results. She also said the latest information from forums she has attended where eye specialists have spoken about the use of Plaquenil is that eye tests need only occur once every 5 yrs - Plaquenil has been used for many many years for arthritis patients with very little reports of side effects. I learned at this visit that my specialist has androgenetic alopecia herself and she told me how when she was diagnosed she decided that she wouldn't allow the alopecia to take over her life and tries to find ways to manage it the best she can. Knowing that makes me feel glad that I found her to help me as it makes it more credible to be getting treatment from someone who has a very good understanding of my situation.
I continue to look for new haircuts and as many before have said 'hate windy days!' I have tried Rogaine (for men - one application a day only) and found that although the hair did thicken up it was fuzzy and looked a bit strange - it also has to be used constantly to keep the growth happening. I might use it again though if my condition worsens.
Hope the information is helpful.

Comment by Debs on May 13, 2013 at 12:26am

Hi Celia, yes I am definately coming, I have just emailled you for directions. Great stuff. Xxx

Comment by Celia on May 12, 2013 at 12:36pm

Hello all.  Something has happened on this site - it starts off with posts from last year.......I have gone to page 98 to get here.  I do hope you ladies are able to come still on Wednesday.   I am expecting 6 of you all being well.  My e mail is celiareeve@hotmail.com if you need any directions you don't already have.  Hope all's well. Look forward to seeing you.  We will let the rest of you who cannot join us know how we get on and if we are 'ahead of the game' and able to make a plan to get some serious co-ordinated help and info.................

x

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