Comment

Comment by Jules UK on November 16, 2013 at 5:47pm

Thank you Debs. That's such helpful information. It's reassuring to think that there are further options for us to try. I will definitely email to participate in the research. X

Comment by Betty on November 16, 2013 at 2:46pm

Thanks Ellen! I would do just about anything to encourage more research.

Comment by ElleMN, USA on November 16, 2013 at 2:42pm

I just emailed from Minneapolis to see if I can participate in the study. Will let you all know when I get a response.

Thanks for the info Debs! You are an amazing note taker!

Comment by Betty on November 16, 2013 at 2:28pm

After much reading over the last 3-4 days, I am soooo confused. Is there or is there not anything that I can really do to prevent this from spreading? It seems many people try different things with some success here or there but is it really the treatment or just their body correcting itself with or without any intervention? I see a lot of value in supplements, etc but some of the treatment options look so scary!

I guess what I am trying to say is should I leave well enough alone for now since I have very little loss (and the biopsy basically removed the spot I had) or is there something preventative I should be doing? I dont want to make it worse but I dont want to just let it happen if there are true treatment options out there. I do know they are VERY individual as far as effectiveness. I am not sure where to go from here. My Derm is as sweet as can be but I am not sure she is equipped to handle this. Maybe I need a specialist but we can't afford to pay anyone right now that isn't part of our insurance (which is very good). How do I know if someone specializes in it? Just print the list of providers and go to their websites? Ack! Lol

Any suggestions? I think I could think a little more clearly if I can stop crying. Lol Plus this is probably just adding to my confusion over being diagnosed with Fibromyalgia two weeks ago (which was a long time coming and kind of a relief to have a diagnosis that FITS after 20 years of being blown off and shuffled around).

You all seems so helpful and supportive and I am happy to be here. TIA for any insight you might have. I know every one of you was and is facing these same questions and hope you can offer guidance.

Comment by Betty on November 16, 2013 at 1:44pm

Debs, thank you for gathering all of that information and sharing. Is the DNA study only being done in the UK? I would be happy to participate but do not know if I would be eligible since I am in the US.

Betty

Comment by Debs on November 16, 2013 at 1:02pm

Thanks Celia, it was actually a very uplifting morning, I came away with more info that I had imagined and although not a cure there are at least a few more things we can try out if we feel inclined.  Putting my feet up now and having a night just relaxing in front of the TV

Comment by Kath UK on November 16, 2013 at 1:01pm

Debs - all that information is amazing.  Thank you for taking such exhaustive notes. 

I was interested in the fact that Dr Tziotzios actually said FFA was 'an epidemic' in UK.  I've thought for years that it was under reported because I kept seeing ladies with the same hair loss pattern as I had and wondering what treatment, if any, they were having.

I will certainly take part in Dr Tziotzios' research project.

Thank you again for the info.

Comment by Celia on November 16, 2013 at 12:14pm

Debs - thank you very much for all of that info.  You must have had an exhausting day, what with getting there, listening to all of that - on a subject that is so emotive and making such comprehensive notes too. VERY much appreciated.  The epidemic statement is a rather shocking and reminds me of the first stages of internet research I did before, in desperation to find others similarly afflicted, I started this forum on Alopecia World.  I refer to that early Daily Mail article which reported that FFA was 'the new epidemic among women' .  For those of you who haven't read the article - it is easy to find and I found it so compelling that I contacted 2 key professionals interested in FFA, namely Dr Harries and Carol Michaelides. When I saw Dr Harries recently I tentatively suggested that he lets his patients know of our forum which they may derive some comfort and support from.  So - lots to think about, Debs, following on from your notes. Thanks again ! X 

Comment by Debs on November 16, 2013 at 11:52am

CARF MEETING

3 dermatologists attended

Dr Christos Tziotzios is doing a research project and needs our DNA.   He will send you a kit to your home for a saliva sample. Please email him for kit christos.tziotzios@kcl.ac.uk

He said that FFA is now an epidemic in the UK. 

Aim of treatment: 1 stop inflammation

                              2 control disease activity

Drugs:

Antibiotics; doxycycline, ciprofloxacin, rifampicin, lymecycline

Steroids; scalp injections, oral - prednisolone, topical - dermovate, etrivex shampoo

Hydroxychloroquine sulphate

Roaccutane - usually used on acne but can be used on scarring alopecias if pustular 

Minoxidil - regaine/rogaine.  increases blood supply and shifts hair into a growth phase.  Foam is best causes less irritation.  Must use every day for 6 months to see a difference.  

Pioglitazones; diabetic drug, used in USA for lichen planopilaris.  Slight risk of bladder cancer

Laser - LLLT low level laser therapy.  6 - 9 months to see a result. Activates hair growth stage.  Not on NHS.  One woman at meeting uses a helmet 25 mins every other day.  Make is IGROW you can buy on internet.

PRP platelet rich plasma - already in use for other alopecias.  Derms said think it would work for FFA.  You take some of your blood, remove plasma, inject the plasma into scalp.

 

Food: derms agreed that sugary  foods promoted inflammation in their acne patients and did think the diet plays a part however the medical profession has not carried out any studies on diet!  Sugar, dairy and alcohol we things many of the ladies knew from experience to trigger inflammation.

Cloning techniques

www.replicel.com see carf website there is a link to a video

www.histogen.com

Microneedle rollers - concept that slight injury promotes hair growth.  Already proven as areas that are tattooed often retain/regrow hair. Nanogen company are retailing this product n 2014.

Hair simulation tattoo - short strokes representing hair that can fill in gaps and create an illusion of hair density. www.looklikeme.com live in 2014 will give details of tattooing for aloecpia.

Hair transplants - when this is done with FFA it can trigger the FFA to reactivite, so not recommended.

Causes: genetic predispositon plus environmental factors. 

Lots of research is going on.

Although there are no new drugs to try some of us might want to look at the microneedle rollers, laser helmet, PRP.

Again ladies please do contact Dr Tziotzios and donate saliva for his DNA research.

 

 

 

 

Comment by Jules UK on November 15, 2013 at 4:27pm

Welcome, Betty. Sounds like you've caught our friend FFA, early. Let's hope so.
I've seen Dr Harries today. He is "encouraged" by comparing my photos from a year ago with now and believes there is no worsening. He even uttered the word "burnout"! I, however, am convinced that my hair has thinned further, but am feeling happier, nonetheless. Next appt, 6 months.
He suggested a hair transplant as feasible if burnout is likely. But also confirmed that the recent cloned hair follicle cells breakthrough would be a likely treatment for us with FFA. One day... He ran through the stronger immune suppressant drugs available, but I decided that it's not worth putting oneself in the way of life threatening side effects,such as breast or skin cancer, for a non-life threatening condition.
Having eyebrows tattooed on Dec 5 at Belinda Hayle, in time for Christmas.
So, mixed feelings but possibly more positive.
Have a good weekend, everyone.
Xx

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