Comment

Comment by Catherine on September 17, 2014 at 4:02pm

Hi everyone,

Having lost faith in every drug I have taken for this horrible disease, I stopped reading all the articles online about a year ago. But as my hair loss is progressing quite fast at the moment, I was interested to see whether anything new has been published, and saw this recent article by Jerry Shapiro et. al.: "Frontal fibrosing alopecia: a retrospective clinical review of 62 patients with treatment outcome and long-term follow-up". the article reports that of these 62 patients, "Reduction in symptoms and hairline stabilization were achieved in 97% of treated patients with intralesional corticosteroids. Thirty-one percent of patients were able to stop treatments and remained in remission for six months to six years." 97% is an extremely high proportion, and I am of course tempted to give injections a go again (I tried them once and stopped because of the fear of skin atrophy). If any of you have had steroid injections, I would love to hear your experiences. Has it worked for you? Would you recommend trying that line of treatment? 

Thank you so much!

Catherine 

Comment by ElleMN, USA on September 17, 2014 at 2:17pm

I'm constantly reading and searching for plausible answers to this problem. I thought some of you might be interested in reading this article about glutathione.

http://experiencelife.com/article/glutathione-the-great-protector/

Comment by Jules UK on September 17, 2014 at 3:38am

It's been just over a week since the UK hairloss survey went live. I was wondering whether anyone had completed it and how they got on? There is another phone conference tonight and it would be useful if anyone had time to feedback. I tried to start a discussion on this website but it hasn't appeared..... Thanks everyone!

Comment by Meme on September 9, 2014 at 3:04am

Hello C

Really sorry can't make those dates I am on holiday.

meme x

Comment by Celia on September 9, 2014 at 2:38am

Good morning ladies - for those in UK with access to M40 near Beaconsfield and would like a get together, I have revised the dates to 16/17/18th of October - I do hope this will be of interest to some of you.  Please say which of these dates you can make and apologies for changing.

Comment by Marian on September 9, 2014 at 12:45am

Thanks Alice, wish there was a definitive answer for my question but like most of the info on FFA it seems to be a lot of guessing and speculating on things. Sigh, still not sure if it is worth the risk of worsening my hairline...anyone else have surgery stories?

Comment by Jules UK on September 8, 2014 at 3:06pm

Calling all UK based ladies. The hairloss survey is up and running from today until October 31st.
Please, please add your questions to it so that FFA can grab some attention! It can be completed anonymously if you prefer.

https://www.surveymonkey.com/s/hairlosspsp

This is the direct link to the survey but there's also a paper based PDF that can be printed and posted off.

Thank you, this is a real chance to secure some research. But only if enough of us contribute. FFA sufferers are in a minority, I know.
Julie x

Comment by Alice on September 7, 2014 at 3:56pm

Marian, I had a hysterectomy without removal of the ovaries, few months before I noticed my hair loss. I've often wondered if there was any correlation. I haven't had any surgery since then, though.

Comment by Marian on September 7, 2014 at 12:44am

Has anyone had surgery and if yes did it affect your FFA?

Comment by Meme on September 5, 2014 at 9:08am

All of those dates are fine for me. x

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