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Comment by Catherine on September 25, 2014 at 5:17am

Hi C, Thank you so much for organizing! Is it possible to reach you by train from London? I don't drive unfortunately...

Thanks,

Catherine

Comment by Celia on September 25, 2014 at 4:37am

Hello ladies in the South East - I am trying to organise a get together as it's a while since we had one - I am suggesting the 15th,16th or 17th October if anyone is interested - close to Junction 2 M40 - please let me know if you can make any of these dates and I hope to see you !

Comment by Catherine on September 24, 2014 at 5:43pm

Hi Debs, Anne and everyone, I will try to get a transcript of the full article on the injections (as opposed to just the abstract). I am not subscribed to the medical journal that published the article, but I will see if my GP can download it for us. 

More soon...

Catherine 

Comment by Debs on September 21, 2014 at 1:49pm

Ladies using minoxidil please be careful if you have cats, it is toxic for them, i used throwaway latex gloves to apply topicals when i used them to ensure nothing was transferred to pets.

Good luck with your treatments.

Comment by MJ on September 20, 2014 at 9:45am

I am going to try to use it at night, but I think thAt means I will need to wash my hair every single morning. I only like to wash it every other day and sometimes less on the weekend. I was told to use it over top of the Rogaine. Of course I failed to ask how long I should wait before applying it. I am going to pick up the rx today and start tonight. I am excited about using it on my eyebrows. The Rogaine has definitely helped them along, but I would love to see them fill in a bit more.

Comment by Alice on September 20, 2014 at 8:01am

MJ, I've been using Eilidel cream on my brows for over a year and they have mostly grown back. I started using Rogaine on my scalp about 6 mos ago and my hair has never been thicker. I am seeing some new growth at the front hairline, so apparently not all of the follicles are scarred over. It seems to me that using Elidel cream on your scalp would be very messy. I quit using it on my brows in the morning because it made it hard to fill in the sparse areas with makeup. Rogaine might work without the Elidel. It has for me.

Comment by MJ on September 19, 2014 at 9:10pm

Hi ladies, I wanted to give an update to my follow up with my derm at the Cleveland Clinic today. I am still pretty stable from my last visit in May. Maybe a little loss, but not too much. My regiment has been changed. I am now going to use clobetasol solution only 3 x week. I will use rogaine followed by Elidel cream daily. Apparently, the combination of Elidel and Rogaine has been shown to grow hair in FFA patients. I am a little anxious about how the Elidel cream will work. I hope it will be easy to apply without making a mess of my hair. Anyone else using this application? Also, I signed up to participate in a survey project on FFA being conducted by Duke University. It is an online survey. I would encourage all those in the U.S. to ask their derm about participating. It will be a five year long study to follow patients and their progression. You have to do this through your doctor and sign a consent form.
MJ

Comment by Classical Anne in NC mountains on September 19, 2014 at 3:16pm

Catherine already provided the information on the study in direct quotations.  In hyperlink, it is as follows: http://www.ncbi.nlm.nih.gov/pubmed/24738979

Please do not be dissuaded from trying the injections!  I can't imagine what horror stories some may have heard, but I am speaking from 15 months actual experience!  Knowing how thin the skin on your forehead is in the first place, I can't imagine how deep anyone believes the 'dents' may be, but I assure you it's just not that visible to others.  And it is completely reversed with the use of Retin-A type ointments.  It is the least invasive medical therapy offered -- no chemical effect, no risk of reactions with any other drugs in your system.  It is entirely superficial -- and it works. 

Comment by Jean on September 19, 2014 at 2:36pm

Hi Jules

I've also completed the questionnaire - hope something positive comes out of it!

I've got your informative fact sheet but would be really interested in your experience (and that of others) on the best place to get the toppers, please.  I've got a couple of wigs for when I REALLY need them but the toppers could be a good intermediate for now.

Many thanks

Jean

Comment by Jules UK on September 19, 2014 at 2:21pm

Thank you Meme. That's great! Apparently, it's got off to quite a slow start..... But I've just heard that CARF have signed up as partners. As well as other major organisations, like BAD. Perhaps some of the issues raised here might provide questions for the survey, if enough of us contribute , such as the efficacy of steroid injections.
I'm still not brave enough to go for injections and considering following Debs by leaving off meds altogether.
Off to Spain on Monday - I'll put the hairpieces through their paces with the heat and the pool!
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