How is your hair loss now, Brenda.

I went for my hair do today - I used to so enjoy visits to the hairdresser - fortunately they are very caring and made a nice job of it for me.  I can go a bit longer before the wig plunge I think.

Anyway - Happy New Year to all of you.

I would like to plan a day here for the UK dwellers in Jan as we have done a couple of times before. It would be nice to see you all. x

Happy new year to all!love and best wishes Sammi x If anyone wants to meet up in Manchester let me know, maybe for a coffee after or before appointment if travelling to see Dr Harries x

Happy New Year to everyone!

Happy New Year to all!  Celia my hairline is still receding horribly.  Zyrtec has taken care of the itching.  I'm using clobetasol twice a day now and the inflammation  seems to be lessening.  or it may be the doxy helping.  It's all such a puzzle.  i need to check into wigs but i dont know where to go.  My dermatologist told me to go to a guy in Chicago but its a four hour trip one way and i'd have to go at least twice.

Happy New Year everyone!  I have been seeing a new dermatologist and tried the plaquenil but ended up with a rash from it and had to stop it. He now wants me to take methotrexate which I have started today. Hopefully I will be able to tolerate it. Has anyone else tried this before? It is supposed to be an anti-inflammatory drug sometimes used for rheumatoid arthritis and cancer. I hope it will help my scalp which is always dry and itchy. My hairline has receded more in the past year, but seems to be staying the same for now, although my bangs are very thin, and it's hard to hide the bald patches.

KarenGinny the first generic for plaquenil that i took caused a rash all over my body.  my Dr. said to find a different manufacturer or take true plaquenil.  I havent had a rash since.  

Brenda I have just sent you a personal message with a 'friends' request, if you don't see it then please see my post above 'FACTSHEET FOR FRONTAL FIBROSING ALOPECIA', please read it and you can get my email address. If you contact me I can send you that factsheet which contains wig website addresses so you can get yourself properly iinformed. You dont have to drive 4 hours to find a wig shop you can safely order online if you know what you are doing. The webiste addresses in the factsheet will give you everything you need. Wigs are a new product for most of us, myself included, so we do need to do our research and take advise from people that are experienced wig wearers. All this is in the factsheet. Happy New Year.

Hi all, just wondering how those taking Zyrtec are getting along.  Are you taking 3 times the daily recommended dose like the case study?  I switched my usual Claritin allergy meds for the recommended daily dose of Zyrtec each night about a month ago.  I've also been on Plaquenil for six months The redness and pain has lessened considerably.  I don't know if the Plaquenil is finally kicking in or the Zyrtec is helping.  I feel much better, but the shedding continues.  I'll discuss it with my doctor at my 3 month appointment on Friday.

MJ, I believe I had ffa for at least 2 years before I ever had a painful flareup.  I started out losing the wispy hairs around my hairline when I was about 48.  I just thought it was part of the aging process.  I never even noticed any extra shedding during that time.  It was only after I had a painful flareup & went to a doctor that I started to notice of the hairs in the shower and sink.  I've never had extreme shedding with ffa.  I usually notice between 20 & 30 hairs in the sink on the days I blow dry my hair.  The problem is that many of those hairs aren't growing back.  I'm still able to camouflage my hairloss with the help of a Rogaine & a good hairdresser, but the hair around my face is definitely getting thinner. 

MJ, coloring my hair is also what caused me to go to the doctor about my hairloss.  I had my hair colored in February 2013 and noticed that my entire scalp was tender.  My hairdresser hadn't use anything new, and I assumed it would get better.  My scalp was still tender two weeks later, so I started looking for  my symptoms online.  I took me a while to find ffa, but I knew it was exactly what I had as soon as I saw the pictures of the early stages.  I've seen 3 doctors who all agree it's safe to color your hair, so I keep on coloring.  I figure my hair might as well look good as long as I have it!  I will say, however, that the hair color burned around areas affected with ffa for a few color sessions after my diagnosis.  I'm guessing it was affecting the open follicles where the hair had recently fallen out.  It no longer hurts when I color my hair, but I do experience pain when the wind blows extremely hard.   

Hi all, Just got back from my 3 month derm appt.  I was very disappointed because while I was with the doctor, the building was evacuated due to a power outage.  I never got to talk to him about using Zyrtec.  I've been using Plaquenil for 6 months and a .05%  Betamethasone topical steroid for 3 months since my scalp was extremely sensitive to Clobetesol.  The doctor very pleased that the redness & inflammation has lessened considerably.  He didn't seem concerned when I told him that the shedding is about the same (At least it hasn't gotten worse!).  He said it sometimes takes 6-9 months for the Plaquenil to affect hair loss.  He is also prescribing Amoxicillan to treat the acne breakouts I've been getting along my hairline (possibly from using the topical).  He suggested I come back in 6 months, but I requested a 3-month apt to discuss other options if the hair loss continues. 

By the way, I've noticed that the a lot of the hairs that have fallen out over the last month or so are different.  I'm seeing lots of little fine wispy hairs between 1 & 2 inches in length.  Has anyone else experienced this?  I wonder if I'm sheddiing some of the new growth from using Rogaine. 

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

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.

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. 

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...

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.

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.

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.,,,,,,,,,