Comment

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!
X

Comment by Meme on September 19, 2014 at 1:54pm

Hello Jules

Have just filled the questionaire in,

Comment by Debs on September 19, 2014 at 1:09pm

Dear Catherine, i am delighted to read your post. can you give us all the link to the study, i have not seen any studies that show a 97% success rate for steroid injections or any other drug. All
Studies i have read mention using injections but have not achieved much of a result even when combined with other oral drugs.

The atrophy that can happen made me decide against this treatment, my derm does use steroid injections but was not seeing results at his clinic that made it worth me risking being left with dents. I use retinol on my face, for wrinkles and it does fill out shallow wrinkles however it would not fill in very deep dents.

If the clinicians that published this data have a technique that differs from other derms or are using a different type of steroid to inject then we could have a viable treatment for FFA.

Any more info on this study would be much appreciated.

Comment by Spenser on September 18, 2014 at 8:18pm

Missouri members: is anyone going to some of the Bald Girls Do Lunch events in Missouri Sept 24-28? The details are here . Thea will be at all the events. I have relatives all over the place so I try to meet her when I can.  It's also posted at http://www.baldgirlsdolunch.org

Comment by Classical Anne in NC mountains on September 18, 2014 at 6:20pm

Actually, I am my dermatologist's FIRST patient with FFA.  She knew nothing about it when the biopsy result came in, but she looked it up on the internet and then suggested the injections.  I know that sounds scary risky, but I trusted her and it has worked well. I believe she may have used steroid injections for some other condition in her specialty.  If you like your derm, it wouldn't hurt to ask.  Mine is one hour away, I'd hate to drive 3 or 4 hours every 6-8 weeks.

Comment by Annie on September 18, 2014 at 3:09pm

I'm also considering steroid injections.  The topical / plaquenil combination hasn't helped with the irritation & hair loss as much as I'd like.  I am thankful for any improvement, but I think it's time to take the next step.  My doctor has never mentioned injections, so I doubt he'll be able to administer them.  I live in southwest Missouri.  Can anyone recommend a doctor in this area?  I'm about 3 hours from Kansas City & a little more than 4 hours from St Louis.

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