Comment

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

Comment by Heidi Short UK on May 10, 2013 at 10:55am

Hi Celia I have tried to email you on the address you gave me but it keeps failing perhaps you could email me on heidishort@ymail.com speak to you soon!

Comment by Heidi Short UK on May 9, 2013 at 5:04pm

Just got a bit confused I think this website has had a make over! The pages are now back to front which does make it easier to follow, but a bit confusing when you first  go to the web site!

Celia the train time table says I will be arriving at Burnham at 11.39am, hope thats ok. I have to be back at the station for 3.45pm so I only have a few hours, but it will still be great to meet everyone. See you wednesday!

Comment by Celia on May 8, 2013 at 4:40pm

Heidi - I have never done that journey - but - just ask directly when you arrive in Reading. Please call me to let me know when you will arrive in Burnham. x

Comment by Heidi Short UK on May 8, 2013 at 3:42pm

Sorry I forgot to say hi Christie and welcome to our select group! From your photo you wouldn't know you had a problem with your hair, it looks great.

Comment by Debs on May 8, 2013 at 3:42pm

LIz, I have looked at 3 photos of this lady and I agree with you that it does very much look like FFA.

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