Comment

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.

Comment by Catherine on January 12, 2014 at 4:39pm

Rita, I put aloe vera gel on my scalp to relieve the itching and the dryness. It helps a little and I prefer to use it than the steroid lotions (Synalar, Clobetasol etc), which have thinned my skin considerably. But I am not sure the aloe really helps with the inflammation. It just feels soothing in the moment...

Comment by Alice on January 12, 2014 at 4:35pm

Rita, I haven't tried aloe but have found that tea tree oil helps with the itching. I put it on with my fingertips. It smells strong at first but soon disdipates.

I found clobetasol to be very irritating but am doing better with betamethasone. It's weird that some of us have itching and tenderness while others don't. 

Comment by MJ on January 12, 2014 at 4:31pm

I had a typo in my last post. Meant to say only do highlights in the front. I did not realize either that this was not a private group...

Comment by Rita - Canada on January 12, 2014 at 3:10pm

Has anyone tried aloe vera gel to the scalp to lessen inflammation.  The Clobetasol lotion is causing small bumps even though I apply sparingly and scalp is still itchy so don't want to keep reapplying it.

Comment by Liz on January 12, 2014 at 2:58pm

Hi. Is there anyway to make this group private? If I put a search for FFA in to Google I get all our comments and pictures. 

xx

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