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Comment by Airam-FFA on August 26, 2017 at 3:17pm

Hi Nina

When I find something I will post.

Best wishes

Airam
oXo

Comment by Nina Jones on August 26, 2017 at 11:50am

Hi oxo
Lovely to hear from you. I live in the UK and have considered having them redone but not in permanent ink. The 'sideburns'still look great and when I saw a new dermatologist in April asked if I minded passing this idea on to some of his other patients. I was delighted.Just such a shame about the second lot although acceptance is the key and I'm doing something about it and hopefully next year I can get them redone.In fact your suggestion about the tattoo programme makes me think may be I"ll contact them...
Please if you are doing research on tattoos for hair I'd love to be updated.

Comment by Airam-FFA on August 26, 2017 at 11:27am

Hi Nina

I am sorry to read that your tattooist 'got it wrong' when you went back to him/her. Would it be worth finding another tattooist to correct the tattoo? We have a TV programme in the UK that is about putting tattoos right.

I am interested in researching further into tattoos as a way of camouflaging the hair loss. I have always been anti tattoos but I have seen some amazing tattoos used to cover cancer and burns scars, and my mi d has been changed. This morning I was watching tattoo artists in the Singapore Ink Show - there are some tattooists who are amazing artists - my views have definitely changed.

Since having my consultation at Guy's earlier this week, I have been using the shampoo daily. It is a much higher concentration of Clobetasol Propionate than the dermovate lotion that I had been using. No side effects atm - but because I am having to wash my hair daily, it means that this crappy condition is causing even more intrusion into my mindset - no chance of ignoring it :(

oXo

Comment by Nina Jones on August 26, 2017 at 4:27am

Hello - I was diagnosed with FFA in 2011 - I've been taking anti-malarial tablet every day as an anti-inflammatory and vitamins for the hair, hair loss is very slow, people often comment on my 'bouncy curls' but freaks me out when I read about how one can go 'almost bald' especially as I went and did the most stupid thing earlier this year. It began a couple of years ago when I went to a tattooist and got him to put some fine lines, like hair, around where my 'sideburns' had gone...the result was amazing!!! Looked almost the real deal and I could tuck my hair behind my ears, and my confidence was back again. Then I went to the same bloke this February and just thought as he had done such a great job before, I just wanting him to fill in the few missing bits that had come in the last couple of years - this time the result was hideous!!!! So on top of everything else, am having laser treatment to get rid of this 'thing' he has tattooed, so I have a double whammy to contend with. On the plus side, as said before, still lots of hair, but on the down side, as I said before, when I hear that others are 'almost bald' I think, if I don't get rid of that tattoo, I am going to look doubly weird!!!!          

Comment by Jacqui on August 25, 2017 at 8:15pm

Kristen P I totally agree!  My derm also scoffed at the link to sunscreen and FFA. I would rather lose my hair to FFA than to chemo. I won't stop using sunscreen unless there is a broad long running study which proves otherwise.  Then I will be hiding under long hats and shirts so no one will see I have no hair anyway.  

Comment by sallylwess on August 25, 2017 at 5:11pm

Yes, Christi Q, I also put on 15 lbs.  All in the stomach.  I looked like I was six month pregnant.  Dr. Donovan said that there is a 5 - 7 lb. weight gain in the stomach that some women will experience.  I have gone back on it, but I have promised myself that if I put on more than 3 lbs., this time, I will go off.  I've never been able to lose the 15 lbs.  

Comment by Christi Q. on August 25, 2017 at 5:00pm

For those of you on Dutasteride/Avodart, did you notice you gained weight when taking it?  I have packed on 15 pounds since I started a few months ago and my weight never fluctuated before.  The weight is all in my stomach which I didn't have before.  I called my doctor and she basically said it was all in my head.  There is a woman in my office though that is on Finasteride, and she is experiencing the same thing.  I want to get off this drug, but I'm terrified all my hair will fall out if I do!  I'm also on Rogaine/Minoxidil.

Comment by Joy on August 25, 2017 at 2:54pm

5 HTP is a serotonin increases works like Zoloft for those who do not want to take antidepressants - I am currently taking this

Comment by sallylwess on August 24, 2017 at 7:50pm

Hi Ladies.  You all have left a lot of information here.  I was interested in the treatment they prescribed to you at Guy's Airam.  I have never heard of the medication they prescribed and wonder what the counterpart, if there is one, in the USA would be.

I just came off of using plaquenil for about 6 weeks.  My scalp was terribly inflamed.  As bad as it has been in at least seven years.  That is why I went on plaquenil.  It cleared up my scalp to a great degree, but I started having terrible side effects and could not continue using it.

I know use clobetasol solution as needed.  Protopic as needed. Minoxidil 5% has been used since January.  I did not shed hair or see any increase in redness or flaky spots when I started Minoxidil.  I think it helps and I have seen some hair growth.  I also saw a great deal of hair loss while I was on Plaquenil.  

Just last week, I added dutasteride to my plan.  It is the second time I have been on it.  I stopped before because of weight gain.  I find it stop the hair from falling out, so I am trying it again because of the great loss I've had in the past few month.

I have had FFA as a confirmed condition since 2013.  I think I've had it since 2006.  I am nearly half way bald and am losing hair at the nape of the neck now.  I want to hang on to the hair at the back so I can continue to wear toppers.  

I believe that sun screen contributes to this condition.  I wore them daily in my moisturizer and makeup for over 25 years.  Pauliegirl, what is the brand that you are no using that you think is safe?  I find titanium dioxide in everything.  Even vitamins have it in them.

I think stress is a factor in causing our bodies to go into overdrive with inflammation.  I also think the GI track is part of the problem.

Are any of you a part of the Facebook group:  LPP - Put Out The Fire?

Comment by AnnieMay on August 24, 2017 at 2:35pm

I completely understand the stress component as this started for me after two years of dealing with the deaths of both of my parents. For me antidepressants are not an option. I tried them years ago and had terrible side effects. I seem to be very sensitive to all medications. I have also used sunscreen for years in all the facial products I use but so has everyone else I know and they don't have FFA?  I am going to look for more natural sunscreen products. I think about all of you lovely courageous women who have dealt with this for so many years. It can be all consuming everyday and I hate it. Honestly I could go about my day so much easier if I didn't constantly have these awful scalp tingling sensations. I don't know if it's the heat, or FFA or how I react to the topical steroids? What do you all do to help relieve that?

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