Claire - doxycycline is an antibiotic.  Made me feel nauseous and I could not identify any benefits !!

Valerie - I have sent you the postcode via the mail on this site - let me know if you don't get it !

Jules - re: agenda - haven't had any suggestions yet, but how about if we talk about

- meds /effects/improvements/weight gains ?

- dermatology visits, frequency, level and type of monitoring

- improvements felt to be linked to diet

- how to combat low self esteem/anxiety etc

- wigs/hairpieces

- current research - stem cell ?

Just brainstorming on my own whilst cutting the grass...........

Sounds a great list but how long have we got?? I'm particularly interested in the medicine that people have taken and any benefits/side effects. On going research is also really useful as it might give us all hope. 

Claire - thanks for that - say 5 mins each topic. This is just a sketch of what we might discuss before lunch and more relaxed nattering - hope OK.

I'm very annoyed with this site!  I tried posting a new discussion and after writing a ton I clicked "add" and it disappeared.  Then I decided to add a picture to my profile, and as you can see it's upside down.  I can't replace it or turn it around.  I think it's time to call it a night.

Really appreciate the invite to lunch/meet up but sadly hadnt realised how far down the M40 you were. Very interested in support group meetings so please keep me informed. 

Anne - go into your settings and edit your photo.  Sorry you ended up in a Yoga position - a rush of blood to the head can be good for you..............

Sorry you can't make it, Valerie, but stay in touch.

My knight in shining armour (husband) has said he would drive me down and visit the golf course! So look forward to meeting you all. Thank you for the invite and support shown so far. See you Saturday. 

Knights are good aren't they - another knight is delivering his damsel here then off to the local hostelry.  See you on Sat - I have sent you an e mail on this site.

Looking forward to seeing you again, Polly.  I am sorry not to collect you from the station but my knight is on a Crusade right now or he would have picked you up as last time.  Safe journey, thanks for making the trip.  It's easy for me - just sit here and wait for you lovely ladies to arrive ! x

Oh dear !  Not had that prob before. Unsure why you can't delete it ! Try again - go through all the options - got to be possible.

Anne - go to the option that says My Page.  Take it from there.

Anne - go to settings then my page.  Let us see you the right way up !

I liked the photo Anne, it made me giggle.

Wish I could join you also - hopefully next time - P x

We'll make a summer plan, Pauline, for another get together.  And hopefully Cathy too. X

Hi Celia,

Just wondered if it might be a good idea if you gave me a telephone number just in case my sat nav fails me. Looking forward to seeing you all tomorrow. Claire.

Celia, forget the last request just checked on your area and see you have already given it to one of the other members-so I have all I need for tomorrow. Thanks.

Ladies - thank you very much for making the journey today and for your great company.  I think we all gained from meeting up again and it was lovely to meet the 'newbies' ! Seriously I do value your friendship and the info and inspiration you bring to our albeit short get togethers.  Thanks to the knights in shining armour who delivered a couple of you to the door and also to the knight who waited at Paddington.  Hope you all got back safe and sound.  Stay in touch !

Thank you Celia for your wonderful hospitality, greatly appreciated. It was also good to meet everyone and to share our experiences. All the best to everyone. Claire.

Celia

Thank you so much for your hospitality and inviting us to your lovely home. Everyone was so friendly, informative and supportive. It was well worth the journey.  Thanks again Celia.

meme x

Celia

Thank you so much for the lovely lunch yesterday - it was so kind of you to give us all a chance to get together, and I think we all had a really good time! It was so nice being able to have the opportunity to meet up with other members of the forum and talk freely about our condition - I hope we will all keep in touch, and meet up again! Best wishes to everyone,

Pam

Thanks for the messages all of you - the pleasure was mine - just to have a chat and see you again and to meet new ladies.  You are all so positive and inspiring ! I have one pretty umbrella with butterflies on that was left here and also Meme's  little plastic pots - I will keep these for you unless you would like me to send them - otherwise......we'll have a barbecue late summer when the weather is balmy and we will all be cured by then.  Best wishes. x

Oh, sorry Celia, I'm always leaving little plastic boxes lying around. Please dont worry about sending them it will be a good excuse (not that I need one) to come to your barbecue in the summer.

I'm up for being cured!

meme x

A belated thank you to Celia for a lovely day on Saturday.  You always make us so welcome! And it was good to see new faces as well as the familiar friends. 

Jules x

Marian i have taken plaquenil for almost three years now for lupus.  I first noticed my hair loss in Nov. 2010. I was diagnosed with lupus in March 2011. Plaquenil has helped my lupus but hasnt had any effect on my FFA.  I'm on all the medications you are on with no improvement.  My dermatologist asked me if i wanted methotrexate but i declined it last november.  I see her next week and i might give it a try.  Im still looking at wigs but havent made any decision yet.

C:  I declined methotrexate last november because i catch every virus and bug that goes around.  I dont need my immune system suppressed.  Plus i had a very bad reaction to imuran another immunosuppresant.  But i may decide to try the methotrexate.  My hair loss is more noticeable by the day.

Celia and Brenda,  I am currently taking Methotrexate 3 pills 2 times a day, once a week. I've been on it about a month and do notice my scalp is a little less itchy, but may not see real results for a while. My current derm did a biopsy and thinks I have LPP instead of FFA like my 1st derm said, but it's all very similar I believe, and most of my hair loss is in the front hairline. I had tried the plaquenil but had to stop when it gave me a rash.

Hi Celia - a few months ago I found and read the article you were quoting from.  It seems to say that if Hydroxy doesn't work within 6 months there's no point staying on it and that was what my dermatologist told me last time I saw her (just before she said there was basically no point in me seeing her again!). 

I hate to sound negative but it looks to me as if at the moment none of the doctors anywhere know of any medication that will stop FFA.  I've stopped using any medication except for Dermovate (clobetasol lotion) which I only use occasionally now.  My hair is still disappearing and there seems to be nothing I can do except just accept it as a fact of life.

Let's hope that eventually a cure will be found - if not for us then at least for our daughters and granddaughters. 

By the way - are men never affected by FFA or only rarely?  I kind of assumed that all the members of this support group are ladies.  Am I wrong about that?

Hi all, just wanted to comment on a couple of your comments.  C, I also read the study that said that Plaquenil works best in the first 6 months, but I've also read articles (including one in the last CARF newsletter) that say it can take 9-10 months to see visible results.  I've been taking it for almost 9 months and the redness has definitely subsided.  I also think the hairloss may not be quite as bad.  I still have pain, especially when the wind blows, but it's better.  I think Plaquenil works so gradually that you barely notice it. 

Mandy, my experience with pain is very much like yours.  It seems like it got much worse after my diagnosis.  Do you think it's the topical?  I stopped using mine last summer, but had to start using it again when I had a flareup. 

KarenGinny.  My derm diagnosed me with FFA and LPP.  She didnt do a biopsy because she said the scarring was so evident.  I too had a bad reaction on my first try at a generic for plaquenil.  When i saw a new lupus specialist he told me to try another brand.  I had my pharmacy order the real drug and ive never had a problem with it.

Anne, I also had a severe ear infection a few years ago.  I took two rounds of Amoxicillin, then ended up having to take Zirithromiacin to clear it up.  I've always wondered if the perhaps the infection triggered my ffa since I'd rarely been sick in my life up to that point.  Regarding antibiotics, I've always had oily skin, and have taken more rounds of antibiotics to combat acne than I can count.  I have been taking probiotics for about three months and have started making kefir, which has natural probiotics. 

Really interesting comments about probiotics.  Does this mean that if I make my own yogurt, it may help? Or is that too simple?  I've just heard from Nottingham that I've been randomly selected to take part in the research into psycho-social affects of alopecia.  My appt is on April 8th.  The Dr sounds lovely. Has anyone else opted to participate?

I agree. Really interesting comments about the probiotics, infections and antibiotics. I just saw several similarities, so wanted to speak up. First, when I started going through perimenopause, my skin became very oily and I started to have severe acne breakouts...almost like cysts on my face. I was on Amoxicillin for a couple of years. I think my FFA was definitely triggered by a medical condition....while not an infection exactly, I got Influenza really bad the year before my FFA started. It literally took my lungs months to recover (probably close to having an pneumonia). Finally, I actually thought to myself the other day how much better my FFA seems now that I eat an Activia yogurt every morning regularly (for about two months now). I have MUCH less hair shedding. I wonder if we are onto something?