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

Hello Jules

Have just filled the questionaire in,

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

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. 

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.

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 

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 !

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

Yes Catherine - by train from London is easy.  I will send you directions.  Can you make any of the dates I suggested ?  If people let me know which dates are possible then hopefully we will find one date that suits most.  I will invite you as a friend on this site to give you info. Thanks, C

Meme - have added the15th Oct to list of possible dates - any good for you ?

Hello C

Sorry, meant to write yesterday. Our trip has had to be cancelled so I can now make any of the dates.   Thank you C.

meme

Hi C,

The 16th would work best for me, if that suits you all too?

Thanks so much,

Catherine 

Any of the dates would suit me - Oct 15th, 16th or 17th. I`m easy! Just let me know what suits you best, so that I can book it in before other things crop up!

Cheers,

Pam

I will e mail Jules about the dates for our get together - she is still on holiday I think and missing this glorious weather we have here !!! I will keep posting on here and sorry if I appear to keep repeating as several ladies are logging on to this site intermittently.  So looking forward to seeing people !

Catherine has said the 16th is best for her - I will see if that's OK for Debs too x

Ladies - so far it looks like we have Deb, Pam, Catherine, Moira, Meme and hopefully Jules.  Norfolk Girl - if you change your mind please let me know - it would be lovely to meet you !  If I have missed anybody out, do shout ! x

Hi Terry - I have the same problem - it is as though the hair is much finer and tends to lie flat.  Due to the intra lesional injections, I have been left with a ridge at my current hairline and the hair seems to annoyingly follow that contour - I do wish I had never had those injections.  I use a volumising shampoo called Herbal Essences uplifting volume then a Kerastase conditioner topped off (!) with KMS California root boosting spray before blow drying what is left ! I swear I come back with less hair every time I go to the hairdressers - all that blow drying and pulling at it whilst that is being done - I don't think is so good.  I am going to ask my hairdresser to just dry it using her fingers then literally just finish it off gently with a brush - I take my own brush as the spiky hairdressers ones hurt my scalp.  I do sound precious don't I ? !

Sorry you can't make the get together - for those who have missed the info - it is on the 16th October.

Norfolk Girl - a Skype chat sounds good. Sorry you can't make it too. x

Hi Terry. My hair is now frizzy and unmanageable however I was given some good advice by a lady with FFA and it worked for me. I told her how I changed to natural unperformed products and barely touched it through fear of it falling out. She suggested that maybe I was been too kind to it. So now I don't take any notice of what make my shampoo/conditioner is however I always use the conditioner that you have to leave on for 5 plus minutes. I also dry with one of those round brushes with soft bristles all round the outside. It's done the trick. My hair now drys flat and is not breaking off as much x

Hi Ladies, I have had the same issues with my remaining hair -- it is frizzy, limp, and totally uncooperative!  It is for that reason, rather than how far it has receded, that I now usually wear a wig to meetings and gatherings.  [Speaking of which, I hope your group meet is wonderful again!]

Celia, I have found that some form of Retin-A cream, which I get in samples from my derm, fills in the injection dent rather miraculously.  If I stop using it for about a week, it does tend to show up again.  But so easy to erase it with the cream.  And, of course, I'm still receiving the injections, so can't expect it to fill in naturally and totally until some time [perhaps a couple years] after I stop the injections.  But as I've said before, my little dent is barely visible to anyone other than my husband or derm, and is so easily covered with bangs.  I hope you can 'erase' yours soon!

Best to all,

Anne

Thanks Debs for letting us know about the CARF meeting on the 14th of November. I will definitely go too!

Hello Ladies,

Just thought that I would pipe in about "THE FRIZZ". I have had difficult frizzy hair all my life. My hair is about 1 inch coils, very coarse and dry. I could never leave the house without a lot of product which ends up making my hair crispy. Recently, I have been using stuff out of my kitchen to calm  my hair. I wash my hair every other day and the night before washing, I usually slather it with coconut oil (olive oil if I do not have coconut). I then put  it in a bun at the top of my head and over the whole thing with a plastic grocery shopping bag and go to bed. Next day, I wash it out but I do not over wash it.  Then I condition, rinse and use a leave in conditioner. By the time it dries, the hair is softer. I never brush or comb my hair because it will result in a huge disorderly afro. If I could get rid of that nasty coconut oil smell then I would use oil in my hair during the daytime also and not leave in conditioner. I hope that this information helps. When I was a child, my grandmother spent many hours massaging all her grandchildren's skin and scalp with coconut oil. I think she knew something. 

Hi MJ, Well, I hate to say this, but I definitely think the flu vaccine was a trigger for my FFA. Mine started about a month after my first flu vaccine. There certainly could have been other factors involved....but whatever the mix was, I think the flu vaccine was a trigger for me. My immunologist told me no live vaccines and to be careful with other ones. My endocrinologist and my dermatologist (CARF recommended) both agreed that this could have been a trigger for me. However, I know that all our triggers seem to be different, so if you have not had trouble with the flu vaccine before...it probably isn't one for you. This condition is so crazy because it seems to be so different for everyone. Good luck making this decision.

Oh dear - I am due a flu shot in 10 days time.  I had one last year and spoke to my doctor about the probs |(extra) it might cause me - she said it would not be a prob for me - now I don't know what to think.....

If anyone coming to me for our get together next week on the 16th does not know how to get here - please send me your e mail address to my inbox on this site and I will give you directions - don't want to give them here for obvious reasons.  Look forward to seeing you !

The flu shot apparently does NOT contain live viruses - it cannot give you mild flu just a sore arm.  I will go ahead and have this.  The nasal one they are giving to under 4s in UK does contain live viruses but they have removed the ones that make you sick. 

I'm very wary about all injections, flu and otherwise. If you do have the flu injection Celia do so because you have informed yourself and decide to and not because the doctor suggests it, unless you are in a high risk category and having flu would be a major health risk.

Enjoy your meet up next week.

xx

Okay guys - reality check.  I was diagnosed in March - -so, about 6 months of treatment (and I am taking just about everything you can take) once all was up and going.  Still seem to be losing the battle.  I am on the verge of "giving up" the battle.  Am I being too hasty?  I was so very hopeful when this mess began and am now walking around in a bit of a cloud.  I suppose I am looking for a "atta' girl -- hang in there" on an overcast Friday morning in Atlanta.  Thanks for putting up with me, ladies! :-)

PS - I hated my hair in my profile pic - sure miss it now.  Oh well :-)

I'm having the same problem with my hair that so many of you are having.  The hairs around the areas where I have the ffa are wispy, curly, and full of electricity.  I suspect these hairs have been damaged by the ffa and just haven't completely fallen out yet (lovely thought).  It also seems like the rogaine foam contributes to my frizziness.  My hair is naturally straight, so I'm always fighting it.    My hairdresser showed me how to rub a tiny bit of argan or vitamin e oil on my fingers and lightly coat those flyaway hairs.  This trick has worked wonders for me.  I even keep a bottle of argan oil at work for humid days. 

Has anyone elses arm hairs gone frizzy too? I'm not particularly hairy and less so since I've had FFA but the hairs I do have on my arms look like they've been singed. They are almost zigzag 

Some interesting questions out there right now.

FLU - I had my injection last week and actually forgot about it til it popped up here.  I am high-risk and required to have the shot every year.  For me, no connection with my FFA.  Been regular with the flu shots since long before the FFA set in.

FRIZZ - I really hate it!  I have naturally curly hair which I've worked hard to tame all my life.  But this is a lot more frizz than curl, and I do not like it!  Terry, I will look for Elvive.  Thanks.

ARM HAIR [who knew this would ever be a topic of conversation?] I lost every single hair on my arms, and can even see the million tiny depressions where the follicles died.  But since I began using Rogaine on my eyebrows [not my hair], I've gotten about a dozen very fine blond hairs on my right arm, but not my left.  Go figure!  And though they've thinned, I've still got plenty to shave on my legs.  Where's the justice in that?!

JEN - my heart aches for you. I hate that you are losing hair so rapidly, especially as a young mom with so much else in your life.  I've got 2 different opinions on giving up at this point.  Yes, 6 months is too early to abandon all hope, though it may be time to seek a different combination of treatments.  On the other hand, if it's going so extremely that you know you'll be into a wig very soon, then I would say, "Let it!"  You don't need added stress in your life, which undeniably exacerbates the FFA and any other health problems you may have.  Maybe dropping all the treatments, and finding a wig you really feel good in, is the way to go, and may even serve to slow the stress-induced loss.  I wish you comfort and self-confidence again.

Liz, I have noticed that the hair I have left on my arms, which used to be quite hairy, is very fine and sticks out every which way. Some of it looks like it has been singed. The hair left on my legs, mostly around the knee,  does not look like this. Go figure.

Hi all, I wanted to let you know about my latest endeavor to try to lessen the inflammation caused by my ffa.  I saw a lecture regarding inflammation / weight loss on a PBS station with nutrition specialist JJ Virgin.  On her diet plan you take 7 high inflammatory  foods out of your diet for 3 weeks (dairy, gluten, corn, sugar & artificial sweeteners, soy, peanuts, & eggs) then start adding them back into your diet one at a time to try to figure out which ones are causing problems.  I've been taking plaquenil for over a year, and it has helped, but it has not slowed down my fffa symptoms as much as I like.  Anyway, I decided to try JJ Virgin's diet plan.  After all, I can do anything for three weeks.  I started to tell a difference in my joint aches & pains after only three days.  Two weeks into the diet I could see that my scalp was less pink in the areas affected by the ffa.  I think it's probably too early see any difference in the hairloss, but I'm encouraged.  Today is my 21st day on the diet.  I honestly feel better, plus I've lost 7 pounds!  I have my 6 month appointment with my doctor next week, so I'll let you know if he notices any improvement in my ffa.

Message for Mary from Amersham - I just saw that you have joined our merry band - welcome !  You are very close to where I live and we are having a get together near Beaconsfield this Thursday - you are very welcome to join us ! If you can figure out how - send me your e mail as a message on this site - into my inbox and I'll give you directions if you would like to come on Thurs.

Hi MJ, I am curious if eggs are allowed on your anti inflammatory diet as they are on the Paleo diet and what is the name of the one you are following?  I came across another anti inflammatory diet- Dr.David Perlmutter,neurologist. It does get confusing as to what is considered to contribute to inflammation.  The rest of the foods mentioned by Annie would be the same pretty much. Thanks.

Hello C

I am so sorry it doesn’t look like I will be able to come to yours on Thursday. I have been in bed for the past 2 days with a vomiting virus and although I am feeling better I certainly do not wish to pass it on to you and the ladies. I also do not feel up to the drive. I apologise for letting you down as I know you will have gone to a lot of effort. I am also upset as I did find the get together last time a real boost to my self-esteem, just being able to see and talk with you all.

Have a lovely day, sorry again

Meme x