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Hair Colouring with FFA

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Ruthdiane View Drop Down
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    Posted: 27/January/2017 at 10:54am

Hi all,

I am new to the group today and only this week diagnosed with FFA. I am booked in for a biopsy next week and meanwhile have been told that following this will start treatment with steroid lotion applied to my scalp daily. I was told by the Dermatologist that my scalp is very purple and angry just now. She is 99.9% certain of diagnosis but biopsy planned to be sure.

To date, my hair loss is just at the beginning of my centre parting going back around an inch perhaps, could be a lot worse but obviously it will progress without treatment.

My question is; I have coloured my hair with permanent highlights for years and it is looking bad just now, grey hair taking over. The Dermatologist said that colouring makes no difference but I am scared to go ahead in case it worsens my situation. also, would I need to confide in my hairdresser and would she even take it on knowing of my problem. Thinking of her insurance etc. she may not wish to do so.
Any help or advice would be very much appreciated, by the way I am 60 years old.

Thanks

Ruth

Edited by Ruthdiane - 27/January/2017 at 10:54am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 28/January/2017 at 8:56pm
Hi Ruth

I was diagnosed with FFA over two years ago.  I have been using Regaine (Minoxidil), Benovate scalp application as well as Hydroxychloroquine...Regaine twice a day and Benovate once a day.  I have my hair dyed every six weeks (to cover the grey (I'm 52 years old) so really it's just a root touch up but it is obviously in the areas where I have the FFA).  It has had no detrimental effect whatsoever to my FFA.  Obviously my hairdresser is fully aware of my situation (she had noticed my hair loss before me but put it down to stress...I was going through a hellish time with losing my parents and brother through terminal disease) and she has never hesitated in keeping me as a client.  In fact your hairdresser will be your best aide in helping you cope with FFA.  No one, who isn't aware of my situation, realises that I have this condition and that is all down to my hairdresser who has given me a cut which helps to disguise it.  Even my Consultant comments on my hair...every time I see her (now once every three months) she greets me with "Ahh...the lady with the lovely hair".  
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Ruthdiane View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ruthdiane Quote  Post ReplyReply Direct Link To This Post Posted: 29/January/2017 at 2:45pm

Thank you so much for your reply, it has really put my mind at rest. Just one more question; sorry.... I have been having lighter contrasting foil highlights as a total head colour for years, well, since my grey hair was too overwhelming for the lovely grape/richer red colours.

My daughter seems to think that as the lighter hair colours involve peroxide of some nature, this is not helping. May I ask, I realise that I am a year or two older than you, but are you colouring your hair in lighter/blonder shades?

Thanks again for answering my post; I have had a really bad few days wondering how bad my hair loss may get, it isn't bad as yet but after the biopsy on Wednesday I can start treatment.
Another thing, do you use medication applied on to your scalp? this is what my I have been prescribed, it is called Dermavate. I was worrying about applying this and then going out having my hair coloured.

Thanks again

Ruth
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 29/January/2017 at 7:22pm
Hi Ruth....I have blonde dye so yes, it is peroxide based.  I use a similar scalp application to Dermavate called Betnovate.  I only apply this once a day, at night before I go to bed and I have done it the day I've had my hair dyed without any problem.  However, speak to your consultant as they should be able to offer you advice.  My Consultant (who was very very experienced in hair loss) said there wasn't a problem in getting my hair dyed or using my GHD straighteners. :)   Since starting this three pronged attack (Regaine, Hydroxychloroquine and Betnovate) my hair hasn't got any worse...maybe just a tiny bit around the one temple.  I think my fringe has possibly thinned a bit but on special days/nights I use Aveda Thickening Tonic sprayed on before I blow dry and it definitely helps to bulk up my hair.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ruthdiane Quote  Post ReplyReply Direct Link To This Post Posted: 29/January/2017 at 11:20pm

Hi again

Thanks for your reply. It will be interesting to see what my consultant says after my biopsy but my GP, at the time of my referral to the Dermatologist said to use Regain but that it couldn't be prescribed and so very expensive to buy. I decided against it but when I mentioned it to my consultant she advised against Regain as it isn't effective and can cause more soreness.....all very confusing.
Consultant said she is taking biopsy for accuracy of diagnosis but also said that she cannot recover the hair lost thus far but can halt further progress with Dermavate. I have since read that this is not terribly effective by itself. All very confusing.

To compound my issues I have Diabetes and taking various meds for that so oral medication will have to be carefully monitored should that become an option later on.

Thanks again and any further hints or advice most welcome.

Ruth

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 3537vanessa Quote  Post ReplyReply Direct Link To This Post Posted: 31/January/2017 at 11:58am
Hello

I have FFA and was diagnosed just over a year ago.  My hair loss is very noticeable and I either wear a scarf or a hairpiece now. 

I was told by my doctor that colouring my hair would make no difference and I did up until I could no longer bear to show what's left of my own hair.

But, I am interested in the fact that you're diabetic, as my consultant mentioned this morning that some diabetic medications have been found to delay or even stop the progress of FFA - so, this might be an avenue worth exploring for you.

I'm really struggling most of the time to come to terms with the condition - hairpieces and scarves are all very well, but it would be lovely just to find a hairdresser who could make something of the little hair I have left and make me feel feminine again :(  
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Ruthdiane View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ruthdiane Quote  Post ReplyReply Direct Link To This Post Posted: 01/February/2017 at 7:08pm
Hi Vanessa

Many thanks for your reply. I too am struggling with my diagnosis, I have been today for my scalp biopsy and my head is very sore. I keep telling myself there are worse issues that other people have to cope with, but our hair is part of our femininity as you say and knowing this doesn't make it easier to bear.

That is an interesting point you make about the Diabetes meds, I have been on various cocktails of meds for my condition and it could be that I am on one of these without knowing. I will try and research that a bit further.

I have sourced a better hairdresser than the one I have been using for the last few years, she is someone I have known for years but now, I think it important to get more professional advice than just doing the same old same year in year out. The thing is she is very inexpensive, but now, my hair is suddenly a lot more important as you will understand.

Thanks again for your reply, all the best.

Ruth
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 04/February/2017 at 6:45pm
Hi Ruth, sorry for the late reply (been away for a few days).  I buy 3 months supply of Regaine although this probably does me for 4 months in total :) Usually it's about £44 including delivery via Pharmacies on the internet (it's a lot more expensive if you buy it over the counter).  Yes, any hair that we have lost cannot be regrown as FFA is a scarring alopecia (cicatricial) which means that the hair follicle is permanently destroyed.  While Regaine obviously can't help to promote hair regrowth it is thought that it makes the hair around the affected site stronger and therefore more like to stay put! :) It also helps to stimiulate growth in the unaffected hair around the affected site and I can one definitely say that this has helped my hairdresser to disguise my hair loss.

Medications for Type 2 Diabetes have been identified to help with FFA.  It's aimed specifically at the loss of a protein called PPAR-y which regulates fatty acid storage and glucose metabolism.  It triggers inflammation which results in scarring and permanent loss of the hair follicle so the diabetes drugs which are meant to block PPAR-y in diabetes could prove very useful in helping to halt FFA.  Defintiely worth talking to your Consultant.

I saw a Tricologist privately before my hospital appointment came through and he confirmed FFA straightaway (although he did say it would have to be confirmed by a biopsy).  He wrote a letter for my doctor recommending that I be prescribed a scalp application steroid and Hydroxychloroquine.  Fortunately my doctor followed his advice and I was on this medication within a few days.  The trichologist also recommended that I start using Regaine (had to be 5% which, at the time, was only available for men as the female equivalent was only 2%).  Soon found out that Boots wouldn't sell me the male version if I told them it was for me as it wasn't licenced in the UK for women!  Now I believe there is a 5% female version that has been approved for sale in the UK.

I also spoke to my Consultant about a hair transplant once the FFA had died down completely.  She told me that it would only be a 50% chance of being successful.  One of the ladies under her care had spent £3000 on a small area and it had all fallen out (although she did get a refund of £1500 apparently!).  If my hair loss stays as it is then I've no need to go down that route (have also looked at Hair Solved replacement hair pieces but it just looks so much faffing on with that every few weeks).
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Mimzy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mimzy Quote  Post ReplyReply Direct Link To This Post Posted: 11/February/2017 at 3:36pm
Hi, this is my first time of posting . My dermatologist has diagnosed me with ffa but has taken a biopsy to confirm diagnosis. I am a red head and my scalp is white which makes it all more obvious , I am currently using hair fibres which has been a godsend and my derm has given me a steroid to rub on my scalp once a day . I'm dreading that it may get worse 😔 Is there anything else that I should be trying ? I am great full for this site
Thanks in advance x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 11/February/2017 at 8:44pm
Hi Mimzy, has your Dermatologist not prescribed you Hydroxychloroquine?  I've been on this since before the Biopsy (saw a Tricologist, privately, before my hospital dermatology appointment and my GP fortunately accepted his recommendation to prescribe this to me ASAP). The sooner you are on it the sooner it can help with slowing down the hairloss (it tackles the inflamation).  Also, Regaine (5%) is also useful although, once you start using it, you have to keep using it so I know a few people (who I've met during hospital visits) opt not to start using this as it's not available on prescription so is obviously a commitment financially. I doubt that the scalp steroid application (which I also use once a day) will help to slow down the FFA.  I would discuss these other two treatments with your Dermatologist or go and see your GP.
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