my derm perscribed me 400my of hydroxy and I am only 5'1".  do you think I am taking too much?

I am 5'3" - I was prescribed 200mg twice daily but I did not feel good with that - I take 1 only and feel OK.  It is a little disconcerting that the prescribed dose seems to vary according to who we see. Does 'size' mean body mass as opposed to height - that would make more sense.  Anybody agree ?

Rebecca - interesting that your derm said plaquenil doesn't work.

Kath - how are you doing without a derm ?  Who is looking after you now ?

Polly -    I sent away my saliva sample today and I'd noticed when I read the literature that came with the kit that it mentioned blood and/or skin samples.  Dr Tziotzios never said anything to me about wanting blood or skin samples and only asked me if I'd be willing to send a saliva sample for DNA testing.  So I just figured that the literature that came with the test kit was what they sent to everyone who participated in any kind of test for the hospital  (There must be many other research projects being run at Guy's all the time, I reckoned).  Did Dr Tziotzios say anything to you about wanting blood or skin samples?

Celia - I guess I'm just getting on with my life!!  I haven't had a derm since September when she told me that the hydroxychloroquine hadn't worked for me and I might as well stop taking it.  She said that any other medication she had to offer would come with risks of side effects and weren't guaranteed to stop the FFA.. I told her I didn't want to risk drugs that could cause side effects. and she said that in that case she didn't need to see me again.

I guess I've just had to accept that for me the FFA will have to run its course.  It's bound to burn out some time!!

I use dermovate if my scalp gets irritated and I'm trying to be as fit and healthy as I can and get on with doing the things I enjoy.  The hairpieces are a great help in looking as good as I can.

How are things going for you with Dr Harries?  Are you OK with the hydroxy?  I think I rremember you saying you were considering taking an antibiotic and possibly an anti histamine too.  How's that going?

xxx.  

Happy Christmas everyone ! XX

Merry Christmas to everyone. xx

I wonder if Dr Harries' previous questionnaire results might become part of the research being spearheaded by Dr T ? I think Dr H's research may have had insufficient funding.  I have asked him for updates on my last 2 visits but no conclusive thoughts.

Kath - I am so sorry that your derm stopped seeing you after she thought the hydroxy wasn't working. The hydroxychloroquine does not work for me in that I still lose hair, still red etc.  I don't understand how you can be written off.

I am taking antibiotics. No effect. I know that one of our group recently posted that she was considered to be now free of FFA - I have not heard of this happening before - I hope that is still going strong.  Hope for some good news in 2014 !

I was just looking at how many have signed up on this website.  It's now at 117.  I was the 50th member to sign up in late March, 2013.  I don't believe this disease is nearly as rare as doctors think.  I think there are a lot of women who don't have any physical pain, and just accept the hairline recession as part of the aging process. 

I wonder if any of you are experiencing any kind of joint pain.  I certainly am - this has been noticeable for about a month now but has worsened lately.  I understand that arthritis is an autoimmune inflammatory disease and that one of the drugs used to manage this is hydroxychloroquine..............................

The other day someone shook my hand - a rather too firm handshake and I cried out - it was soooooo painful !  I have researched (as one does) on the internet and one of the tests for rheumatiod arthritis is squeezing the hand or foot - if this is unduly painful then that may be an indicator.  Has anyone got a view on this or any experience, please ? x

Celia, I'm sorry you're experiencing joint pain.  I wish I could offer you some advice, but the hydroxychloroquine seems to have helped my aches & pains.  My knees have hurt whenever there's a change in the weather as long as I can remember.  I've been taking hydroxychloroquine for almost six months, and  now have very little knee pain.  I do, however, experience pain in my hands when I do a lot of tedious work such as wrapping gifts, decorating cookies, sewing, etc...  I have some joint pain right now in the joints that connect my thumbs to the rest of my hand because of the extra work preparing for Christmas.

Thank you Annie for your reply.  I will go and see my GP I think and see what he suggests.  Perhaaps the different things I've been doing lately have triggered this situation.  The weather certainly doesn't help - this dampness really seems to get to me.  Sorry to moan !!

I had severe joint pain.  My Dr. said it was from lupus.  Hydroxychloroquine has helped immensely.  I tried to quit taking it because i thought it was the reason i was loosing my hair.  My joint pain got a lot worse and my hair still kept falling out so i resumed taking it.

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.