Comment

Comment by Catherine on September 18, 2014 at 1:02pm

Dear Anne,

Thank you so much for all this information! It is so kind of you to share your experiences with me. I am now quite keen to give the injections a go, but need to find a doctor experienced in administering them. It is good to know that the atrophy can be combatted with Retin-A cream.

I will keep you posted! Thanks again for the encouragement!

Hi Terry I am sorry to hear that your FFA has flared up again. I really empathize. It is the most frustrating, relentless condition... I am looking into wigs too. Not easy to accept, I know! Will let you all know how things go with the injections. C x

Comment by Classical Anne in NC mountains on September 18, 2014 at 10:49am

Catherine, I haven't commented in a while, but if you could do a search on my name or steroid injections, you'd find I have praised them many times, yet continue to be in the distinct minority.  Because of a very large group of other chronic diseases and 13 daily prescriptions, several in multiple doses, I had to refuse any other medications.  My derm assured me the steroid in the injection therapy is totally non-systemic and would not interfere with any of my other issues or have any build up or lasting effects anywhere in my body.  Therefore it has been the ONLY medical treatment I have had since diagnosis about 15 months ago.  And I have said repeatedly, my hair loss sounds minimal compared to other ladies' stories.  The angry, itching follicles are totally under control, though I'm not saying they never ramp up and annoy me.  My hairline continues to recede at such a slow pace that neither my husband nor my derm can actually see any difference.  Of course, I do -- because like most of you, I can't help sticking my forehead right up to the mirror and studying it!  But again, the loss is there, but absolutely minimal.  And because I'm following no other treatment, how could I not praise the injection therapy?

Some ladies are concerned about the discomfort, and I want to emphasize that's what it is: discomfort, not pain.  Each treatment takes about 5 minutes and includes a dozen or more injections, with a teeny tiny needle.  Of those, maybe 1 or 2 cause me to wince for a moment.  Rarely have any continued bothering me by the time I get back in the car.  But there is the occasional one that may sting for up to an hour -- that has happened only twice in my experience.  Surely we're tough enough broads to handle that!

Another concern is that "dents" in the forehead skin may follow, [essentially skin atrophy].  Yes, I developed one dent, eventually about 1/4 inch wide and almost 1 inch long, coming diagonally from my receded hairline down my forehead.  I thought it was a little weird, but easily covered with wispy bangs.  Now here's the GOOD NEWS: a few months ago I asked my derm for samples of Retin-A, which she was happy to give me.  I started applying it to my forehead several times a week at bedtime, and within a month the dent was nearly gone!  Added benefit, so were the wrinkles!

Conclusion: I see no reason why anyone should refuse steroid injection therapy.  Go for it, Catherine!  I hope it will work wonders for you.

Comment by Jules UK on September 17, 2014 at 5:31pm

Hi Terry, thanks so much for doing that! The results of all the completed surveys will be collated after the closing dat of 31 October. Then the 10 most frequently mentioned topics will be identified. Part of this process will be a series of workshops where, I understand, willing participants will be invited to help with this process. That may be when you here something more. I'm sort of getting to grips with this step by step...... Apparently, it's a tried and tested process that's been used successfully for other medical conditions to secure research funding.

Please, please, if you haven't already done so, have a go at the survey!!

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

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