Comment

Comment by Jules UK on November 18, 2013 at 4:35pm

That really is fantastic, Liz. You must feel thrilled! If the regrowth isn't down to meds, do you think it may be due to a change in anything else, such as feeling less stressed? So much of this condition seems just serendipity though. My skin looks shinier and thinner than yours, where the hairloss has happened. Maybe it's just the photo. Dr Harries said I shouldn't use topical steroids because it was so thin. I have barely used them at all so thinning must be down to FFA. I'm so pleased for you, Liz! It also gives us all some hope. X

Comment by Jen on November 18, 2013 at 4:15pm

Hi Liz,

Thank you for posting these pics. My hairline looks like your old hairline except I have lost mostly on the sides and above the ears. I hope and pray that I get back some of the lost hair. I am not on any meds since the steroid injection has caused the largest loss of all of my sheds.

Jen.

Comment by sallylwess on November 18, 2013 at 4:06pm

Thank you, Liz for sending these photos.  How exciting to see the new hair growth!  I would be thrilled.  What are you using?  

Comment by Liz on November 18, 2013 at 3:52pm

Hi Sally. I agree with you about health vs hair. We are all in a very difficult situation. If we choose the medication route, or not, we can never be sure if we are doing the right thing either way. As this condition is not life threatening I have choosen not to take any medication. If in the future I am offered a medication that has proven results I may chose to take it then. I would like to share a couple of photos with you. One taken 3 months ago and one taken yesterday. Both are of the same side of my head.

You can see my original hairline by the whispy bits at the bottom of the picture.

I definitely have more hair growth down towards my old hairline.

My hairloss has slowed down ans some has even grown. It shows the unpredictability of this condition with and in this case without medication.

xx

Comment by sallylwess on November 18, 2013 at 3:38pm

I appreciate the information on Ragaine.  I'm not so sure I want to even think about the side effects, so I doubt I will try it.  Carol, I agree with you on this being a balancing act between hair and health.  At this point in time, I'll take health over hair.  I already fight problems with arrhythmia and racing heart.  I don't need to add to that.

Comment by Annie on November 18, 2013 at 10:34am

Hi All, I haven't been on this site since Friday, and have had a lot to catch up on.  Regarding the roller with the use of Rogaine, I read some information about this several months ago.  It is my understanding that the roller causes tiny holes in the scalp that allow the Rogaine to get into your blood stream.  The article (written by a doctor) that I read online said Rogaine is meant to a topical treatment only and should not be used in this manner.  I wish I could remember where I found this article, but at this point I have read more information than I could possibly remember.

Comment by ElleMN, USA on November 18, 2013 at 10:10am

I heard from Dr. Tziostzios and they routinely collect specimens from all over the world and would highly appreciate any ones participation. They just want to have a phone conversation first.

Again his email is christos.tziotzios@kcl.ac.uk

Please refer to Debs earlier posting for further details. Thanks Debs!

Comment by Celia on November 18, 2013 at 10:10am

Hi Rita - I used minoxidil for about 4 months once.  It did not work for me but I know others have had some success with it.  My worry about it is that, yes, you must continue forever or the newly energised hair will gradually disappear.  At the moment being on hydroxychloroquine and lymecycline, and using clobetasol, I am loath to put chemicals on my head as well as in my tummy.  Maybe I will change my mind, but I remember the regime before going to bed at night.  I found it deeply depressing and seemed to take forever.  But we must all make our own decisions.  Like you - sorry to be down on this idea.  I wish everyone using minoxidil/rogaine success with it - perhaps I will join you. x

Comment by Rita - Canada on November 18, 2013 at 9:37am

As I understand it, once I start Rogaine, there is shedding for some weeks.  Who amongst us can afford this.  Then, once we start this regime, one must continue nightly for the rest of our life as I see it or everything we gain (if we do), will shed. It's a huge commitment and even if we use the foam instead of solution, I would imagine one has to wash their hair daily due to having used the foam. Sorry to be a downer, just trying to analyse whether to start the Rogaine path but then if I don't, wondering how bad will my hair loss be.  Has anyone else struggled with this dilemma? 

Comment by sallylwess on November 18, 2013 at 12:06am

Ladies, especially Debs, thank you so much for all of this wonderful information.  I have been copying much of the information to a file I am keeping on my computer.  I will print some of this out and take it to my dermatologist this week.  It will be interesting to see what she has to say.  

I am somewhat new to this forum.  How I wish I had known some of this information a few years ago.  I might have been able to save some hair if I had been armed with information.  I was diagnosed with FFA in April of this year, when a dermatologist biopsied my scalp.  He was the third dermatologist that I visited after I lost all of my eyebrows and noticed my hairline was receding.  I had actually gone to one dermatologist when my scalp was inflamed, red, and looked as if I had an open wound.  He said I had some sort of allergy and gave me a topical ointment.  I noticed my hair fell out when the inflammation healed.  Then, I notice my scalp was smooth in that area.  Right after that, my eyebrows fell out.  I am not a doctor, but even I knew that I had scar tissue and that no hair was growing where the scar tissue existed.  I knew then that I never would grow hair in those places again.  Each doctor I saw dismissed my hair loss, and my internist asked me if I was plucking my brows too much when I asked her about the sudden demise of my eyebrows!  

When I was finally diagnosed, I was told that nothing could be done. 

Again, thank you for all of you who share so much about this condition.  I feel encouraged and less alone.  This diagnosis has been devastating to me.  At times, I think that I should not be so shallow about such a loss as hair, but my hair has always been a very large part of my identity.  You have no idea how much it means to me to know I am not alone in this journey.  

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