Comment

Comment by Liz on January 13, 2014 at 3:29pm

Celia. Many of my friends have FFA but that doesn't mean that I want them reading my personal posts on this site. Also if our photographs are out there on the internet then we have no control over how they are used x

Comment by Celia on January 13, 2014 at 3:24pm

Liz, I have known for a long time how accessible the forum is. Initially I found it scary too and a very long time ago - I made comment on that.  I haven't told any people in the UK about my FFA.  If I do then it will be because I totally trust them not to make FFA the way I am defined.  But I do think that when people/friends are told what the problem is - there is no going back.  If you've shared your problem with friends, then you've done so because you trust them.  Nobody is just going to randomly research FFA and find you/us.  x

Comment by Liz on January 13, 2014 at 3:07pm

Celia. I appreciate that if this group were private nobody would be able to find it. This group is a great place for information and support and therefore is invaluable. It was just a bit scary that when I searched FFA on google posts and pictures from this group appeared in the search. Perhaps we could use this forum alongside our one on Facebook. Posts on the Facebook page can only be seen by members of the group and members have to be invited in order to join.

xx

Comment by MJ on January 13, 2014 at 7:15am

If you check out Dr. Weil's website, you will see a Q & A on a new treatment for hair loss. It describes the research being done to inject stem cells into the head to grow new hair follicles. This is what my doctor told me about. It describes the process if you are interested in knowing more about it. You don't have to join to read the Q & A library on the site.

Comment by Celia on January 13, 2014 at 4:39am

Hi Liz - I share your concern about the FFA group being easily accessible and for that reason I haven't told anyone I know that I communicate on this forum.  Unfortunately if the group could be made private, that would preclude new members finding us.

I hope you're getting on OK. x

Comment by Jodie UK on January 13, 2014 at 2:58am

Kath, Pauline
I live in Glasgow and my derm is Dr Susan Holmes and although I find her very nice, my treatment has been the same as everyone else in the group, I have spoken to Dr tziotzios and he speaks very highly of her, I believe she is very up to date with everything about FFA, but admits she does not have any answers yet.

Comment by Catherine on January 12, 2014 at 5:09pm

I have been on every drug out there for LPP/FFA: Doxycycline, Plaquenil, Cellcept, Cyclosporine, Prednisone, and have also tried many topicals... Nothing has worked. I have also had injections in my scalp and eyebrows, which I stopped after the first go (I got indentations immediately from these). I now wish I hadn't taken the strong drugs like Cyclosporine... Every doctor I have seen has a different opinion. It is all so overwhelming. And to confuse things, the treatment for FFA is not the same as for classic LPP, even though it is considered a form of LPP. Most doctors do agree however that Doxycycline can be effective for FFA. So this is the drug I am taking right now. Has anyone looked into possible environmental causes of the disease? A doctor has suggested that I have tests done to see what toxins/metals etc. I have in my body, but it is very expensive so I am hesitating...

Comment by Kath UK on January 12, 2014 at 5:05pm

Jules - I have felt my scalp has been more sensitive since Xmas too.  Like you I suspect the mince pies and sherry!  I'm on a very healthy diet again now.

Pauline - I was interested in your tattoo experience.  There's a HD salon near me so I'll go and check out if they offer eyebrow tattoos.  I'm also in Scotland and feel a bit isolated here - and my dermatologist actually has told me she doesn't need to see me again (in other words I'm on my own now!)  Please let me know how you get on with a referral to Dr Holmes in Glasgow.  If Dr Tziotzios recommended her it would be worth trying for an appointment.

Rita - I regularly use tea tree oil and/or aloe vera for the itching and irritation and I do find they help.  Like you I really hate the idea of taking high powered drugs with potential side effects especially if the doctors really can't say if these drugs will work anyway.  FFA is such a confusing condition.

Comment by Rita - Canada on January 12, 2014 at 4:49pm

Yes Catherine, I absolutely detest having to use these horrid drugs. It concerns me greatly with the side effects. I just read toooo much but on the other hand,  one needs to know if something were to present itself, as it just may be the drug is responsible.

Comment by Rita - Canada on January 12, 2014 at 4:43pm

Thanks Alice, I am going to ask my derm, whom I see this coming week  which would be kinder to my scalp/kidneys/liver-  Betamethasone/ Nizoral and also if she's had any patients whose scalp inflammation has been helped by more natural means such as Aloe Gel/T.Tree oil or other.

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