Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

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  • Celia

    Kath - thinking about you and hoping you can rally round and get positive again - sent you a message but not sure if you will have got it ! X

  • Celia

    Linda - what did your eye check up comprise of ? I just read from a card to the nurse - was that the same for you and all others out there ?

  • KarenGinny - Iowa, US

    Linda, Yes I'm having my eyes checked and he will do blood work too. I'm 48 and pre-menopausal so pregnancy is not an issue. I'm also on meds for thyroid and blood pressure but he said would be okay to take them together. So after being on it for a year, have you noticed it helping with the hair loss or inflammation? It seems like with most people it's hard to tell if the meds are working since it seems like the hair will fall out anyway, and burn out when it wants to. But maybe if I had been on this earlier then my hair wouldn't look so bad now.

  • Celia

    Karen, what was your eye check like ?

  • Pam

    Sorry to hear Kath you have been feeling low - we all do at times I think. I have been feeling very depressed recently, as I realise that FFA has become a truly life-changing condition for me. I am an outdoors person who loves walking, cycling, swimming, horse riding, skiing and surfing, and all of these activities are difficult with wig wearing! I hate the look of myself with thinning hair and no eyebrows or lashes, and find it hard to be positive about a future of wigs and hairpieces. I am going to see a guy this week who has been recommended to me who fits hairpieces and wigs. Although I have just bought one, I am still feeling so unsure about the whole thing, and lack the confidence to wear it out and about. I am scared it looks too noticeablely like a wig, and that it feels hot, and may dislodge. I also want advice about how to cope with wearing hats and helmets with wigs if I want to keep up my riding and cycling. The horror of My Hair has begun to dominate my entire life!

  • KarenGinny - Iowa, US

    Celia, I haven't had it done yet, he told me to schedule a visit with the eye dr within the next month. I can post about it when it's done. Pam - I understand your comments about being less active. I feel like I can't go outside anymore unless I have a hat to wear or a headband to wear to hide my bald spots. I hate the wind blowing my hair around and it's hard to enjoy taking a walk or swimming when I'm constantly worried about my hair. I stopped going to an exercise class a year ago because I didn't want my hair exposed to the whole group. I wear my hair with long bangs in the front but there's still not enough hairspray in the world that will help on a windy day. At least in fall & winter I can wear hats more easily without getting so hot. If I wear a hat in summer I just sweat and my hair underneath is a frizzy mess when I take it off! We did buy a treadmill so I do use that at home. I haven't looked into wigs or hairpieces yet.

  • Polly UK

    I had a thorough eye test a month ago before starting Hydroxy. They had a machine which took pictures of the backs of my eyes which were fine and they said it was ok to go ahead with it. I have a question.... my derm said I can now start taking 2 tablets a day as I am obviously tolerating it so I assumed he meant one tablet in the morning and the other in the evening but now I'm wondering if I take them at the same time? What do others on here do?
    Off to Scotland for a week from Monday and will need a case just for all the extra pills and potions plus hats and scarves!
  • April

    Chrisy, my derm said he didn't want to put me on oral medication if I was not done having children because of side effects. However, I would think your OB has much more experience so I'm sure you can trust her opinion. I am going to talk to my OB about it at my appt. this month. My doctor is honestly not very helpful with any of this and I'm thinking of switching. It sounds like some of you ladies are seeing some great doctors. Chrisy, definitely keep us posted on how the Plaquenil is working for you. Maybe I will try it, since I just hate feeling like I'm not at least trying. Thanks!!
  • Polly UK

    Thanks Linda x
  • Kath UK

    Thanks, Celia - you're a honey. Got your message OK.
    Well, the sun's come out again here so I'm going to finish a painting then I'm off to the shoe shop.
    KarenGinny - I had no problems with hydroxy. but I was advised to always take it with food. Good luck with it and I hope you are one of the 50% it works for.
    Kath xx

  • Rita - Canada

    I was given Clobetasol liq.to apply to scalp & derm merely said put some on & rub it in.I decided to only put along the thinning area sparingly. Next appt,she said there was atrophy of the skin & I can't bring myself to use it more than once in awhile & don't believe it does anything but thin the skin. She also gave me Doxycycline 100mg x 1 per day and even though it's against my better judgement of using this drug, have followed her advise by using it for 3 mths now. How on earth does one really tell if hairloss has slowed down.What measure is there to tell the derm if anything has helped other than we/ourselves. We see the thinned & balding areas & know there is still shedding but as to what degree????

  • Sigga

    Hallo I have not being here for a long time, but I have but some photos of my hair loss...

  • Rita - Canada

    Sigga-Excellent advice, wish I had done that but Derms should have come up w/this: taking a photo of one's frontal hair areas before a treatment(which are usually 3-6mths) & one afterwards.

  • Jules UK

    Hi all, feeling very mixed up at the moment.... Just back from a great week in Cornwall. But after using Regaine for about 3 months and taking Plaquenil for 6 months, my hairloss has accelerated considerably. Do I carry on in the hope that something may kick in? Hubby has hinted that a wig may be closer on the horizon. I'm trying to just get on with things as normal but so churned up inside! I've invested in some lovely soft buffs and circular carves from Seasalt. Even on still days, just walking moves the hair to show bald bits and there's barely enough hair to cover my ears anymore. Just feeling disbelief! Sorry, needed to offload! Thanks for being here! Xxx
  • Liz

    Hi all. Jules I've been looking at the handybands from Seasalt. Do let me know how you get on with it.
    Who on this site has amalgam/silver coloured fillings? I was reading something about the mercury in them causing hairloss and maybe causing lichen planus. Both my mum and I have several of these type of fillings.
    xx

  • Rita - Canada

    Liz:I have many, loved/still do, my sweets. I've heard that some people actually do have them removed & refilled w/other kinder material. I wonder if any of the Derms/research has looked at that aspect.

  • Pam

    Jules - I do totally sympathise with you. My holiday in Cornwall was badly affected this year by my increasing sensitivity over my hair loss. I was very self conscious in the sea about my balding sides, and windy walks were a nightmare. I wore a hat a lot, and twice it blew into the sea! Also my eyes seemed more sensitive to the salt water and got red and itchy, and my scalp seemed on fire at times, itching. It seems to have settled down more now that I am back.
    I do have tooth fillings, not sure what is in them though!

  • ElleMN, USA

    Liz, I had my nine amalgam fillings replaced with composite fillings in Dec 2011 because my dentist husband had come across one article mentioning a possible connection in all his research about LP. I'm still losing hair but I'd say my case is more on the mild side, so not sure if it's helped or not. I've also abandoned steroid shots and stopped using creams and ointments and shampoos. I'm just not sure what works and what doesn't so I'm just trying to stay healthy and simplifying things; I also couldn't afford all the treatments! If you can afford to have the fillings replaced you'll be happy with the results but be prepared for some tooth sensitivity while you get used to the new fillings. Do you know if you have an allergy to nickel? That's another trigger for my eczema that I've wondered about with FFA. I think I might just be more sensitive to metals. Hope this helps!
  • Annie

    Liz, I also had silver fillings, but they were replaced gradually between ten and fifteen years ago.

  • Liz

    Hi Ellen. I'll have to find out about having my fillings replaced. I have 3 which have been in my mouth for about 30 years!
    I am allergic to nickel. I have also had bouts of eczema which flare up from time to time and is made worse if I jewelry x.

  • Rita - Canada

    Maddy, I recall you were taking the same med Doxycycline 100mg only twice a day. Also Clobetasol on scalp twice a day. Do you see any difference. i see my Derm tomorrow. Did you also have those scalp injections ev.8 wks.?Thanks.

  • Polly UK

    Hi, I felt fine taking one Hydroxychloroquine 200mg tablet a day for two weeks but after four days of taking two a day I started feeling sick and dizzy so as we're on holiday this week I've cut back to one and already feeling better. Has anyone else had this problem? I am also taking iron as prescribed and applying Dermovate but just doing it once a day for convenience while on holiday. I had felt ok with both of those for past month so it has to be the increased Hydroxy dose...
    Liz, I have a mouth full of amalgam fillings, in some cases it's more filling than tooth!
  • Polly UK

    I am also allergic to nickel!
  • Rita - Canada

    I saw my derm today and she encouraged the use of Rogaine 5% but I recall reading that several people had more shedding for awhile upon starting. Is this what most have experienced? Derm said this happens because the hairs that are just sitting there ready to shed get pushed out by the newly grown hairs. I understand no growth can occur on the areas where FFA has demolished.

  • Sam

    I had the shedding, so much so I stopped it. I only did it for about a month. It also made my ears red and irritated so my doc thought I may be allergic. I am hoping what shed will grow back. But I do hear it works and shedding should be sign its working as better hairs should grow.
  • Jules UK

    Hi Rita, I've been using Regaine 5% since beginning of July. I've since lost loads of hair. I had expected some hairloss preceding some new growth to thicken up what's left but there's no sign of that yet! I've heard from others that it can take around 6 months to see a difference so I am sticking with it in the hope that it will work. Otherwise, I've had no side effects. This sounds demoralising, I'm sorry, but that's my experience so far. It would be interesting to hear from anyone who's had success with Regaine, especially if hairloss was very noticeable but then things did improve. X
  • Annie

    Hi all, I've been using 5% Rogaine since early April. My shedding doubled from week 2 thru week 4, then I went back to my normal FFA shed. It's true that you won't grow hair on the scarred areas, but some of the fine baby hairs around my face has grown back, which helps to cover the bare spots. My hairdresser noticed new hairs sprouting about two weeks after I started using Rogaine. I now have new hairs ranging from about 1/2 - 2 inches all over my head. Regarding irritation, my scalp was itchy & tender for about a month when I first started using Rogaine, but I slowly adjusted to it.

  • Debs

    Hi Ladies, have just got back from a fab holiday in France. So been away from the site for a week. Liz, yes... I also have the old fashioned fillings in my teeth. I had my molars filled as a child due to the side effects of me taking tetracycline antibiotics as a baby for pnemonia... funnily that is the same drug we are being given for our FFA (it only effects babies future teeth not us as adults)...

    Very hot on holiday. Used a synthetic wig (with open wefts) Jon Renau brand and also a couple of nice silk scarves... I was very comfortable in both options and the heat was not a problem.

    I saw an article in the Daily Mail about EYELASH TRANSPLANTS... It is an expensive option but one that might be worth having a go when your FFA has stabilised. The article says surgeon Asim Shahmalak at the Crown Clinic in Manchester performs this procedure. I assume there must be other doctors that do it too. The procedure was invented in the USA apparantly.

    Plus... I saw a couple of ladies on holiday with FFA. I mentioned it to my friends and they agreed that the hair loss was like mine. This is the first time I have noticed other FFA sufferers and had a friend with me to confirm I am not just being paranoid. I really feel this is not a rare condition just under-diagnosed.

  • Debs

    STEROID INJECTIONS... can anyone tell me please... if you had steroid injections and it left you with dents in your head how long did it take before the dents went away? or do you still have the dents and they stay forever??? This may be my next treatment option and I can't find anyone on any alopecia site that has used these injections and not ended up with dents in their foreheads....

    Carol, thanks for the info. I will check out this supplement, sounds like it has a bit of everything we need in it.

  • Liz

    Hi Debs. I have indentations along the area where I have lost my hair which were not there before I had this condition but were not caused my the steroid injections either. Where I had the steroid injections there are no further indentations but in the last 2 weeks I've lost more hair in that area.
    I'm feeling a bit crap today about this condition. Usually I'm ok but I'm now at the stage where wearing nothing is not an option. I don't mind wearing a scarf. I talked to Trendco about not wearing a wig cap and they advised that I should or my wig might not be secure :o( Anyway. Any links to websites selling scarfs would be cool :o) xx

  • Sam

    I think the shots should just be done where you have hair so any indentions should not be visible. Of course if u lose that hair eventually it may be but mine were a centimeter back. I just did one so far but I can keep you posted.
  • Alice

    For those of you using Rogaine, what is the dosing? My derm said she reccommended staring out just 2 or 3 times week, but I failed to ask why. I'm wondering if starting slow makes a difference with shedding or irritation. I almost bought some at Costco yesterday but chickened out after reading the precautions on the box.

  • April

    Debs, I had one set of injections about 4-5 weeks ago. I did get a dent where the injections were placed. My doctor said it is a common side effect but does eventually go away.
  • christiekd

    I also have received injections - twice in a space about a year apart. Both times I got dents where the injections were placed, and both times they eventually went away. I also think they helped and would do it again if my hair loss increased again. Right now I am not losing any hair and have grown my eyebrows back. I am continuing to faithfully use all my lotions, potions and medication in the hopes of keeping things as they are now.

  • Chrisy, MA USA

    Deb, I also had 3 sets of steroid injections about 10 weeks apart. I was ok with the first two sets but the third one really messed me up. I got some dents on my head where the injections went in which they dissapeared in about two months but my eyebrows are still suffering from indentation. It's been three months I stopped using the steroid cream as well and you can still see them. Unfortunately all the hair I gained on the euebrows by doing the steroid cream and injections are gone but let me tell you that dents on the eyebrows really look bad. It looked like somebody carved you with a knife. After three months things looks better but still there. It is hard to tell if steroid injections help with the hairline but it definitely help with the eyebrow hair but you have to keep getting them at least every two months.
  • Sam

    Christiekd, do you mind sharing what lotions, potions and meds you are taking that are working for you? Which is great to hear btw.
  • Annie

    Alice, my doctor gave me completely different advice regarding Rogaine. He said to use the foam morning & night for the first 6 weeks, then once a day after that. He also said that if I chose liquid Rogaine to use it twice daily even after the first 6 weeks.

  • christiekd

    I agree with Carol. Using Rogaine has really helped by my hairline and my eyebrows. I would also like to add that using Rogaine along with Rapidlash has caused my eyebrows to fill in completely. While they aren't as thick as they once were, I now have hair all the way across. I even feel comfortable not wearing makeup on them, which a month ago, I would have never done. Feeling so much better about them.

  • Annie

    I have a question for those who have been on Plaquenil for a while. Did you continue to have flare-ups while taking it? I started taking it June 22. My doctor said it would take a couple months for it to affect the shedding. I felt like things were going fine until about a week ago when I started shedding a little heavier, and now my scalp is as tender as before I started taking the Plaquenil. Should I gradually get better, or will I continue to have setbacks while taking meds? I don't have another appointment with my doctor for another month.

  • christiekd

    I had a setback about a year after taking plaquenil when everything was going fine for a long time. I believe it was because of stress in my life - my mother-in-law became ill, was diagnosed with cancer and died all in a span of about 10 days during this time. Afterwards, I started shedding again. It was a total relapse with itching and everything that went on for a while 3-6 mos. I also have to admit that I had been feeling so good for so long that I was not always remembering to take my medicines regularly.

    When I went to my doctor, we started all over again with my meds: plaquenil, back on doxycycline, steroid creams, and steroid shots. I added protopic, and I also began Rogaine in earnest. Finally, I began taking tumeric after reading about it on here.

    Well, it took a few months, but now I am back on track and am no longer on antibiotics. I am still taking everything else. My regrowth of eyebrows has been astonishing to me as well as the fine hairs around my hairline that have recently started growing. I thought they were gone forever. I'm also trying not to get too attached since we all know things could change rapidly.

    From this relapse, I have learned a couple of important lessons:
    1) Don't get lazy with my regimen of medication and lotions.
    2) Try not to stress! I do this by exercising daily and taking time for me each day.

  • Sam

    Sorry for your loss Christiekd and thanks for sharing your regimen. For those using Rogaine on your brows, did you find that your brow hairs shed similar to hair shedding before it grows? I am worried it would shed what I have and not grow back...
  • Debs

    Hi ladies, thanks v much for sharing your experiences of the steroid injections.

    Liz, your wig will be secure without a wig cap, it is the perimeter of the wig that secures it so the wig cap is really not necessary. I never wear one and was advised not to by the wig salon I use, they also make wigs for the film and theatre industry so are very experienced. I get my scarves mostly from Acessorize the high street shop. Costs vary between £12 to £15 for silk.

  • Annie

    Christiekd, thanks for the information regarding your flare-up. I also lost a family member in August and wondered if that might affect my progress. My scalp feels better this morning.
    Sam, I was also nervous about shedding eyebrows with Rogaine, but decided to try it anyway. I did shed a few, but they were quickly replaced. Within a month my eyebrows were thicker than they had been in years. I should mention that my eyebrows have not been affected by the FFA yet. I've never been blessed with thick eyebrows, and they have thinned over the years. You can find instructions online that tell how you should use Rogaine on eyebrows.

  • April

    Hey ladies! For anyone who has found that rogaine helped their condition, do you use it in conjunction with other treatments? Also, for those of you who have used clobetasol topically long term, have you experienced any side effects from this medication?
    Thanks!
  • Pam

    Has anyone been advised to try stick on hair pieces? I saw a guy this week who works in a wig salon, and he recommended I try a natural hair strip that would stick along the front of my hairline where my natural hair has receded. He said he could match the colour, and it would be attached by a sticky tape which could stay on for weeks on end. I am a bit concerned that it could strip off any of my residual hair left underneath unless it is really in the right place. Has anyone tried using this system?

  • Jules UK

    I was told about stick on hairpieces at bimingham's Trendco when first diagnosed last year. So far I haven't needed to enquire more about them and Pam, you've jogged my memory! After feeling desparate last week, I had my hair cut on Tuesday and my wonderful hairdresser has done a subtle makeover. By bringing more hair forward and re shaping the fringe, allowing long layers at sides to grow down so thickening the "veil" over the ears, I feel as though I can manage so much better! Sadly though, she said she wouldn't be happy styling a wig since she's had no experience and feels it's a specialised job.
    I suspect I've been overdoing the Regaine and maybe that's why my hairloss has been quite marked. Is it OK to use steroid creams at the same time as Regaine?
    Julie x
  • Celia

    Hi Jules - Dr Harries suggested I use Regaine as well as steroid and Plaquenil. Your hair do sounds good ! X

  • Pam

    Thanks for the feedback. If anyone has tried using the stick on hairpieces do let me know. Your hairstyle sounds good Jules, and will hopefully mask the condition for some time. I have been carefully having my hair cut for several years, but it is now that it is hard to hide it, and I have started looking at wigs and hairpieces. I bought a nice wig from trendco, but so far have been too scared to wear it out!! I thought that maybe a front hairpiece would look less obvious. But the thought of having sticky tape on for weeks or days does seem rather nasty, so that`s why i wondered if anyone else had tried them?

  • Pam

    I went to see my dermatologist this week and he has referred me to Dr Harries. My derm didn`t know about Dr Harries until I told him about his research interests, so it is only due to this group that this knowledge is getting spread around - so thanks everyone!

  • Debs

    Hi Ladies, I have just posted 2 photos of me in one of my wigs on our forum under the 'wearing wigs/hair pieces' thread. I decided to pop them on to try and help anyone that is worried about what a wig actually looks like on a real life person. The first photo is of me in very close-up wearing a wig (plus tattoed eyebrows and eyeliner) the second photo is me in a group of girlfriends - none of them are wearing wigs so you can 'contrast and compare' my wig with their natural hair and you can see there is no discernable difference. I hope if anyone thinking of trying supplemental hair this will help you in some small way. XXXX