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.

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...

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

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

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

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

Debs, I may be wrong but I believe you are using Tumeric essential oil and Rogaine 5% foam and if so, which do you apply first? 

MJ, I have a question regarding your doctor's advice about coloring hair.  Does she recommend using foil highlights with no additional color in the areas affected by ffa?  My hairdresser does a weave with foil highlights, then uses a color over my entire head followed by a toner at the end to make the highlights appear more natural. 

Thanks, MJ. 

Just back from a fantastic holiday over Christmas and the New Year in Jamaica.  No real difference to the FFA I'm afraid (in fact I think my hair is getting thinner) but I'm seeing my specialist on Tuesday - not that she'll have anything else to offer!  Sorry to be a pain, Debs but please can you let me have your link for the terrific fact-sheet you put together.  It will be useful to show my derm what other's are trying.  Many thanks  Jean x

Liz - I never realised you have friends with FFA.  I hope that you all support each other well - I presume they are local to you ?   I guess when any new sufferers google the problem - the first face they see on this forum is MINE ! The reason being that I set up this group, thanks to Alopecia World.  There is no way that I know of to change it.  However my stance has always been to tell nobody what my problem is.  So - whilst friends may notice my hair is different - my plan is to start with thin wigs to match - eventually - and then - who knows. I think we have all learnt a lot from each other here and that must surely outweigh the downside that others may take a peek - BUT - only if you tell them.  Your friends with FFA will surely wish to join this forum and take advantage of the amount of knowledge here.  I am about to start with a new dermatologist.  He won't have the magic potion - but I hope to start over. x

Hello,  I know there has been many comments regarding various drugs that are taken for LPP/FFA.  I have been taking 200 mg of hydroxychloroquine for a few months.  My derm wanted to increase it to the therapeutic dose, 400 mg/day.  My GP was concerned because I have only one kidney.  My derm then recommended doxycycline, but I'm concerned about taking an antibiotic long term.   Has anyone come across this "complication" to taking meds?   I don't know what to do. 

Hello Ann, I was on doxycycline 100mg per day for several mths. Also the clobetasol on scalp which she left it to me as to how often I applied. (Acutally got acne eventually from this lotion).  Then Derm said you can't be on doxy forever so she weaned me off by taking 100 mg ev. other day for a few mths and then my hair shedding seemed to lessen and only when I wash my hair do I lose more hair..  Derm said she'd leave a prescription on hold for doxy & if it should become worse again, back on for a good 3 mths then see her again. She said she normally works with 3 mth sessions of doxy after the first bout.  i never had a problem with the antibiotic but I did faithfully take a strong probiotic daily to avoid same.

http://www.carfintl.org/_docs/newsletters/CARF_Newsletter15_Nov2013...

This website has a great deal of questions & answers for alopecia.

Hi, I have just been give L-Tyrosine to take for 3 months - it is an amino acid I believe, has anyone tried this?

Saw my derm yesterday - my hairline hasn't receded any further but my hair has definitely thinned.  I asked about Regaine and she thought it might help but only if my scalp was clear, because it may irritate the redness.  She wanted to put me on steroids or long-term antibiotics but unless I have some assurance of a positive result, I'm not inclined to use powerful drugs in the HOPE they will slow down progression of the FFA.  Unfortunately, the derm couldn't give me this assurance.  I'm sticking with the acupuncture and sensible diet to improve my autoimmune system.,,,,,,,,, 

MJ

The acupuncture is to help regulate my autoimmune system and improve my gut.  The Chinese practitioner said it would be a long process but I'd rather see him than subject my body to drugs which will probably do nothing for the FFA and may further weaken my dodgy immune system!

Jean

Jean, Do you know hat your doc meant about your scalp being "clear" before trying minoxidil, aka Regaine?  Think mst of us have the red, bumpy scalp that is indicative of FFA. I just started using the 2% recc by 2 derms, to see how I tolerate it. I'm starting it only on the sides, where the hair is thinnest but with no any obvious signs of inflammation. Has anyone else with an irritated scalp tried minoxidil?

Jean/Alice. This is exactly the dilemma I find myself in. I used Clobetasol for many months with no issues. Then I developed what my derm called, acne from Clobetasol. I have just purchased Rogaine 5% at the urging of my derm to try it and wasn't sure when to start with this bumpy & itchy irritated scalp situation.  I don't see the derm now for another 6 months which I find way too long since there's always a question which needs answering. It may be that even the derm wouldn't know how to answer to this problem.

Hi MJ, I apply Rogaine 5% every night before bed (I applied it twice a day for the first three months though). I usually fill up the cap and then use my fingers to apply it to part lines all along my frontal scalp area, including both temples. I think it is thickening my existing hair (I've been using it for about six months now), which helps to cover thinning areas. I hope that helps. Maddy

Has anyone used a shampoo for itchy dry scalp such as Selsun blue or others with any success?  I know it's not intended for our FFA issues but thinking of trying it to stop the itching since I have put a hold on the clobetasol with its acne producing issues.

I've only tried 2 applications of the 2% minoxidil liquid, using the dropper thar came in the package. Both times, it dripped down my face, despite holding my head to the side. I really don't want to grow a beard. What's the best way to use this stuff?

Rita, I found that tea tree oil shampoo and conditioner helped the itching and irritation, but it was too drying to use all the time. Others have suggested Headand Shoulders classic formula but I haven't tried it because I thought it might be drykng . My hair is very fine and flyaway, so doesn't need drying out.

MJ, I use the Rogaine foam in the mornings and my Betamethasone topical steroid in the evenings.  I wash my hair every other day and apply the foam to my scalp after shampooing and before drying my hair.  The mornings I don't wash my hair I apply it before styling my hair.  It seems to me that the foam makes my hair more flyaway and dull than usual.  I've been thinking about trying the liquid.

I have also been dealing with acne since I've started using the topical steroids.  I'm on my third topical, and all three have caused breakouts.  My doctor prescribed Amoxicillin antibiotic last week to hopefully clear up the acne.  I don't know which is worse, the breakouts or the hair loss.  Who knows, perhaps the pimples distract from my thinning bangs.  I have to admit that I wonder if I shouldn't buy a nice wig, have clear skin, and and give up on trying to save my hair.  The pain & redness is much improved with the medications, but I continue to lose hair after ten months of various treatments. 

Alice,  Selsum blue claims it's for Itchy Dry Scalp w/ 6 moisturizers and conditioners.  I have the same fine and flyaway hair and very dry but then I color it- don't want to be grey.  What a challenge.

Annie - your comments and other recent ones from many of you would indicate that the meds, any combinations do not appear to have positive, across the board results.  Yet your feeling is that pain/redness is improved and you attribute those improvements to the use of meds.

MJ - using a q tip and applying rogaine to the eyebrows - I would suggest is probably a waste of time.  This disease appears to affect the eyebrows most noticeably first.  Then I seems to continue the attack into the hairline.

My feeling is that we should all continue to adopt a healthy lifestyle embracing a good diet regime, cutting down on sugary foods, exercising daily to raise the heart rate as much as possible depending on individual fitness levels.

I am soon to see a new dermatologist locally.  I am certain that the prognosis will be the same as in the past, and the treatment options will not be any different to those suggested before. Best wishes to all.

MJ - I use Latisse on my eyebrows. I started using it almost immediately (probably 4 years ago) when I noticed they were getting thinner and, so far, I still have decent eyebrows. I use the Rogaine on my hairline at night only. I wash my hair every other day, but sometimes I will just wash the front (bangs) in the sink on the off days if I feel the Rogaine made my hair look greasy overnight. This seems to work for me, but I'm sure everyone is different. 

C, I've been using Rogaine on my eyebrows since my diagnosis 10 months ago, and they are yet to be affected by ffa.  My doctor said he thinks the Rogaine keeps the surrounding hairs poking through and makes it more difficult for the follicles to scar over. 

I think that I have been through a terrible stage having to accept that I have got noticeable FFA, and learning to cope with the consequences of how I look, and how it affects my life style and freedom.

 It is almost like a process of mourning -  for my lost appearance, for limiting my freedom to feel OK about swimming, snorkelling, riding, cycling and having lovely hair, which I used to have!

I have had to come to terms with it, move on, and accept that this is something that I have got to deal with, and it could be far worse after all! I need to get it into proportion compared to other things that can hit you in life.This site has helped me enormously by sharing my feelings with other people going throught the whole thing.

I have become somewhat sceptical about all the various drugs that I have been offered, as I honestly don`t think that the medics are really sure, and we can give them a go, but nothing is definitely going to work.

 So at the moment I have decided to be positive, and try and feel better about myself. I have got a hairpiece fitted which makes me look a lot better, and I have cut down the drugs, and am currently just taking fishoil and organic turmeric, and trying to follow a healthy life style and be happy in myself, and not dwell too much on what is wrong! (Am just about to book a lovely cycling holiday in Asia!!)

Sounds good, Pam - well done ! And great to hear of success stories from those of you on rogaine - all good news !

Good for you, Pam!  Well done. 

The only way I've found to cope with FFA is to do just what you're doing and basically get on with life.  I'm off the drugs too and am concentrating on being as healthy in mind and body as I can and feel thankful it's nothing worse!  The doctors are bound to find a cure eventually but in the meantime I'm determined not to let the loss of my hair interfere with my life. 

Your planned cycling holiday sounds amazing.   

Hi Pam,

You share my thoughts on accepting FFA. I do not need a hairpiece just now but I will need one soon. I would like to know (if you do not mind) what type of hair piece you wear that is suitable for FFA and how you attach it.

Enjoy your holiday to Asia. 

I also am with you Pam.  It has been a journey, and it has taken some time, but I can say I have made peace, for the most part, with having FFA.  I am also trying to just live life in the most healthy way I can.  I know I can't reverse what damage has been done, and I will have to adapt by wearing a wig at some point.  For now, when I am getting ready to go out, I  just try to style what hair I have left, not fret over what is gone, and get on with my day.  I am also drawing on my eyebrows.  Who knew I would have to become an artist?

Thanks for your supportive feedback and comments - it all helps! I must admit it is still early days in terms of wearing my hairpiece, as I had it in December, and so it is only a couple of months, and I haven`t yet had hot sticky days to contend with...it may feel itchy and intolerable then!

I went to a hair/skin place and saw a guy there who was brilliant - he was recommended to me, as he specialises in fitting hair pieces and extensions for both men and women. He drew a template of my forehead and then had the piece tailor made, with fine European wavy human hair identical in colour and texture to my own. The hair is threaded onto a breathable see through piece, and taped in place with breathable wig tape. I can shower and wash my hair normally, and keep in on all the time for sleeping, cycling, wearing hats etc. It acts just like normal hair, so I need to style it with a blowdryer after I have washed it. It needs to be taken off every month so the skin underneath can be thoroughly washed and cleaned, which I can either do myself (by soaking it off for about 15 minutes) or I can go back to him and he will do it for me. I am due a colour treatment next week, so he will do both my own hair and the hairpiece.

The compliments from friends have been amazing - I look like I used to about twenty years ago, and they all say my hair looks fantastic, what have I done! I have just told most of them that I have got a new hairdresser, and had some  extensions put in as I wanted a bit more volume!

The guy who did it is genuinely good, and I have passed on details to Debs as she is compiling a list of recommended people for hairpieces and wigs.

Well done Pam! I agree with everything you say, especially about mourning for your lost appearance and coming to terms with it.  For me that has been the most difficult journey and I too have had serious reservations about the various drug treatments but accepted that all I could do was try what was on offer but I could not bring back what was lost and had to move on.  In the winter it is easier to cope with - I can go out wearing a hat and no one will take a second glance and know why I am really wearing one.

Hi Pam,

I too wish that you can share some pics.  It is very inspiring that you are able to find a way to live fully with FFA.  I cannot go to your hair guy since I am in Canada but it would be great if I can show it to someone here who could probably help me design a hairpiece for the front and temple hairline.