Comment

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

Comment by April on November 15, 2013 at 3:04pm

Pam, are you talking about UV laser treatment? I am currently undergoing the treatment for FFA. The nurse treats the first few inches of hairline. I am on my 16th of 20 treatments. I have lost little to no hair at the hairline since I've been on the treatments. Also, little wispy hairs are growing in along my hairline. The affected follicles no longer look red and enlarged. The scarred area I have has not filled in though. I do no other treatments. I eat a primal/paleo type diet. It seems maybe it is stopping the progression?? Hard to say 100% but it seems to be working at least at the hairline. The rest of my head still itches and it seems my hair is thinning. Does FFA affect the whole scalp or is this a separate issue? Anyhow, laser may be worth a shot.

Comment by Betty on November 15, 2013 at 12:56pm

Celia, thank you for the warm welcome. I am still in the shocked stage right now and just trying to come to terms with what may come. 18 months ago My hairdresser found a small pea sized bald spot on my right temple. I didn't worry about it too much but did go to the dermatologist who said it was AA. I still was not overly concerned at this point and we did the injections. Nothing happened and the spot got to about the size of a nickel. At that point I did start to worry about it a bit. I moved to a new state and my new Derm thought it was time for a biopsy. I had the biopsy last week and it came up with LLP and FFA. Fortunately she took a rather large biopsy and so basically it was like a mini scalp reduction and the spot is pretty mush gone lol. Now I am just trying to figure out what is next and what I can do to prevent this from progressing. I have no issues with body and facial hair and haven't shown a rash though there was (and is) some itching.

I also have IIH (Idiopathic Intercranial Hypertension) and fibromyalgia.

Comment by Celia on November 15, 2013 at 11:19am

Welcome to newcomer Betty.  Sorry you have FFA, but we hope you will find this forum helpful to you.  I wonder what your story is, I couldn't find you anywhere - I hope you're able to navigate this - it isn't difficult and if you read back ( there's loads !) there is a lot of information that might be of use to you.  Best wishes.

Comment by Debs on November 14, 2013 at 4:16am

Pam, I am seeing Dr Harries and I am using exactly the same drugs as you.  I am taking both the doxycycline and hydroxy for 6 months then have to go back to be reassessed.

Flu jab - I did ask about this.  I was told that it is OK to have a flu jab with these drugs.... BUT I have decided I am not going to have the flu jab because I don't want to stimulate my immune system as it is in overdrive already.  I am also not going to renew other vaccinations when they lapse ... I will have a few essentials but the ones I keep up to date in case I travel to tropical destinations I will not renew.   For the past 20 years I have kept all my vaccinations up to date and this has been everything; yellow fever, typhoid, diptheria, hepatitus etc.. so I think my immune systems needs a rest especially  now I am autoimmune.

Comment by Pam on November 13, 2013 at 7:07am

I saw Dr Harries last week, who prescribed doxycycline antibiotic for me, two tablets twice a day, as well as keeping on taking the Hydroxychloroquine, plus Dermovate scalp solution, as it is stronger than the Synalar gel which I have previously been using. Feel fairly depressed that I am just taking more and more drugs, and the hair loss doesn`t seem to have improved at all. Now I am scared that if I stop them it could get worse!

Interestingly I also went to see a trichologist locally in Evesham, Sally-Anne Tarver, who says she is seeing more and more patients with this condition - she says that she reckons it is far more common than people think. We also discussed the possibility of laser hair treatment for this condition -  it could perhaps be a suitable topical treatment - has anyone had any experience of this?

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