Comment

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.  

Comment by Jean on November 17, 2013 at 4:31pm

Please can you let me know where you purchased the Regaine Terry?  I haven't tried this yet but my existing hair is significantly thinner than it used to be so it's worth a shot.

Many thanks

Comment by Maddy, California, U.S. on November 17, 2013 at 3:55pm

That is a great question, Jules! It would be very interesting to know if baldness is increasing in men! I have long wondered about cosmetics, creams, lotions, sunscreens (definitely something that generations before us have not used on their faces and bodies like we do, since they didn't really know that much about sun damage), and pesticides too! All things that are part of our environment these days. I agree, organic is definitely the way to go whenever possible. 

Comment by Jules UK on November 17, 2013 at 12:51pm

Debs, where did you order your roller from? There's such a range of prices. Talking to my husband about your post, he wondered whether the incidence of baldness in men had increased as FFA seems to have in women? Is it something in the general environment such as pesticides? Or something in cosmetics to affect women? If only we could get to the core of the problem! Anyway, I'm firmly organic in as much as possible, food and face creams etc. riverford organic veg boxes are excellent, and Neal's Yard remedies an indulgent treat that I can now justify. X

Comment by Maddy, California, U.S. on November 17, 2013 at 12:34pm

Wow! Thank you Debs so much for sharing all of that information! So helpful and it is nice to know that there is research going on and that maybe there is some hope. I would definitely like to be a part of the research. I will email Dr. Tziotzios! Thank you again and please keep us posted on the microneedle rollers.

Comment by Betty on November 17, 2013 at 11:12am

Thanks Debs. You are right. I guess I was just having a freak out moment and needed to hear the voice of reason lol I am also a little daunted at the thought of finding a GOOD doc as I haven't had the best luck with doctors in my lifetime. I will check out CARF.

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