Jane, if you had an upset tummy with hydroxychlorquine sulphate I suspect it is because you had the generic make of the drug, if you ask to try plaqeunil it should not give you problems. This is hydroxycholoquine sulphate by a different manufacturer. I always make sure I get this brand because it is gentle on your tummy. XX

Celia regarding your post on medication I have been taking hydroschlorquine for over 6 months twice a day and it appears to be controlling my hair loss along with the nightly use of regaine! I never suffered with a red scalp externally so cannot comment on any improvement there! has anyone had a biopsy with Dr Harries he asked me to have one when I initially started seeing him but was too afraid it may leave further damage but have often wondered what it would show?My optican told me not to worry about my eyes and hydrox. he said its very long term use although I would be afraid to come off the drug. Nioxin shampoo and conditioner makes my hair feel much thicker and is especially for hair loss and thining hair, hope this info is of use. x

EYELASHES - When we met up at Celia's for lunch last month we had a conversation about our eyelashes. I knew mine were not as long/thick as before but since then I have really looked more closely and I can see I am starting to lose eyelash from the lower lid on the outer end. I am going to get my eyeline tattoed in a couple of weeks time so create an illusion of having more eyelashes. I am not going to have a thick line, just something quite subtle to enhance my eyes. I did notice the first time I had my eyebrows done (November 2011) that I did not experience any further hairloss in that area. I don't know if the act of tattoing the skin somehow stimulates it and helps to stop further hairloss but I am hoping that having my eyeliner done now whilst I still have some eyelashes might stop further shedding. I will post photos after I get it done. XX

The beautician told me of a product called revitalash for helping eyelashes x An American doctor invented it for his wife who lost her eyebrows and eyelashes to treatment for cancerx

3M DROPS from Philip Kingsley.......... I tried to order some more online today as I have done in the past but was told there has been some legislation banning PK from keeping the 3M drops on the premises. Apparently one can only get these on prescription now from PK's clinic. To do so now I would have to have a follow up appointment (cost about 115 pounds)The drops cost 50 pounds a bottle. Heidi - I remember that you used to use PK's products - any ideas on how to buy the 3M drops ? I told the receptionist on the phone that there was no point in a follow-up apt with a trichologist as I am already seeing a dermatologist. The 3M drops have minoxidil in them - still not sure about trying Regaine, but I know that some of you have had some success with this.

Hi. I hope that everyone is well. Today I went to my local dermatologist.I hadn't planned to as I see Dr Harries and also wasn't sure about my local derm. However I'm glad that I did. He was helpful and told me a few things that I didn't know. He feels that Doxycycline is the best way forward with this disease if it's tolerated well by the person taking it. He said that less and less people are being prescribed Hydroxcloroquinine (I am not sure if he said that to me to make me feel better about not taking it) He then prescribed me Dutasteride which he said is been used more. However I may have to pay privatly for it due to licensing of the drug. He says that he feels that pollutants such as the spraying of insecticides may well have caused this disease and that they are doing more and more studies. He hopes that towards the end of this year they will be getting as many people involved in the studies as possible. He said that due to the conection with lichen planus they (dermatologists) were hopeing to study hair, nails and the vulva.He seemed very enthusiastic today and when I told him that I had seen Dr Harries becuse I felt that he had left me too long after giving me such life changing news he said that they were now putting on more clinics and that he was meeting ladies with this disease on an almost daily basis. xx

Hi Liz - good news that you are now reunited with your derm - I remember you saying there was a long wait between appointments. When I saw Dr Harries last time - he suggested Dutasteride and said that it was growing in prominence in the literature about hairloss, and gave me a leaflet about it. It says 'This medicine is for men only. It must not be taken by women, children or adolescents.'
It's used as you probably know to treat men with an enlarged prostate. I read the entire leaflet. I've copied a piece below for you.........................

Originally Posted by WomensHairLossProject View Post
Are doctors starting to prescribe Dutasteride for the treatment of women's hair loss as well? I know that Propecia is prescribed for some women, like those not planning to have kids anytime soon, but I just read today that a woman is taking Dutasteride so I'm curious if this is common ??

If doctors are starting to prescribe dutasteride for women with hair loss, it is certainly not “mainstream.” There have been several studies examining the use of finasteride in women with hair loss and the study with the most scientific validity essentially showed that there was no significant response. DHT has not been proven to be a mediator of hair loss in women and therefore its reduction, whether by finasteride or dutasteride, does not make sense as a treatment. However there are a few anecdotal reports of some women responding to finasteride. So the shorter answer is no, it is not common to treat female pattern alopecia with dutasteride. I would stick with the proven treatment of minoxidil.
__________________
James A. Harris, MD, FACS
Member, International Alliance of Hair Restoration Surgeons
..............................................................

It's interesting that your derm is seeing more people with FFA. There was no mention of paying privately for the drug.

I hope you get on well with the Doxycycline, Liz. Best wishes. x

Hi Celia. Thanks for the information. I tried Doxycycline but I kept getting thrush so I gave up after a couple of months and I used the Minoxodil but it made my eyes burn...The things we are willing to try in the hope of keeping our hair! x

Liz - are you going to try the doxycycline again - I stopped because I started getting a rash on my face. I am taking hydroxychloroquine now and am losing more hair than before - confusing to say the least - have you tried Rogaine ? x

Hi all
Celia_ I used Philip Kingsley products about a year ago but it was just the shampoo,conditioner and tonic not the 3M drops. I got mine online but Charlie works in a salon who stock some PK products so you could try a local salon, but I don't expect they could prescribe! Sorry I'm not much help! If you have already been to their clinic can't they give you a repeat persciption!
Jane you sound like you have had a nightmare! I wish you well, your luck must change soon!x

Sorry - just reread what you said and you have tried minoxidil (in Regaine ?)

Hi Heidi - no repeat prescription - unless I go into London and have another expensive consultation !

Liz, thanks very much for your info. I really feel that the trigger for FFA is something in the environment that we are all in contact with, like your derm says insecticides or something similar. Liz, I nearly fell of my chair when I read your post... I didn't know my vulva needed to be included in a study of FFA... Good grief what next... I hope this is just the ladies with lichen planopilaris... The fact that so many women are now presenting with FFA is very sad however the upside for us is it is being seen as a condition worthy of study so lets hope we can get a more treatment options soon.

Hydroxychloroquine sulphate - I have been taking 2 pills a day since 6 March and the sides of my hair and temples have stayed the same but more front hairline has continued to shed hair. I see Dr Harries on 12 July. I know this drug takes a few months to get into your system so I am giving up all hope but it is interesting that Liz's derm has said doxycycline is a prefered treatment option if tolerated.

Hello everyone. First time I've had a chance to post anything or even read your recent posts. My father is terminally ill and has deteriorated rapidly in the past two weeks. I have been helping to care for him. It really puts things in perspective re my hair loss. I'm carrying onb taking Planquenil and using Dermocvate scalp lotion every other day which is the treatment my derm prescribed. Howevedr, my scalp is still inflammed. I am very pleased with the eyebrow tattooing I had done recently. For anyone who is concerned about having it done, I'd say Go for it, but make sure you do to a very experienced practitioner. It has improved my appearance a lot and even better, I no longer have to worry about applying eyebrow pencil. Saves a lot of time!
Great to hear that there is to be more research into Lichen Planopilaris and FFA.

Hello all, Unfortunately, I have mild hypertension and have been taking 40mg of Micardis for several years. I have FFA so it is clearly not helping this scenario. Perhaps a higher dose is required but I can't imagine doing so as B/P will then be lowered to an unacceptable reading. All these drugs that are mentioned seem to add more problems. I wish there was a natural approach, Yes, I know, dream on.!!

Caroline, I hope your father is as comfortable as possible at this time. Lots of love to you and your family.

Paula, thanks for letting us all know what Sir David Fenton has prescribed to you and I think it is definately viable that some of us can meet him in London.

Carol - that was funny about the onion juice - I'll try it on my husband first - he has a good head of hair.................

We ladies in the south east should meet up again soon I hope.

And for the west country ladies also , please - I would love to host another get together in the Autumn. I know it was a mission for Caroline and Heidi as well as Julie to get over here - but - we shall see..... Liz - I hope to meet too soon. Hope all is going well for you.

Today I caught sight of myself on the car window as I was getting in - what a shiny pate !!!!!!!!on the forehead !

I wonder if I might ask if you haven't done so already - please add where you are from / continent / or a bit more specific if in UK after your name eg London/ MC - whatever - I find it quite helpful. Thank you - I hope you don't mind me asking. x

HYDROXYCHLOQUINE SULPHATE AND EYESIGHT.

I have been wearing reading glasses for 4 years. I have not had an eye test since September 2009. I went to an eye test today as recently I have experienced eye strain whilst reading and because this drug can on rare occasions affect eyesight I wanted to get it checked out.

I went to Vision Express where I had my previous eye test. I do need a stronger prescription for reading - but this is only a normal amount of change that would be expected over a 4 year period. I said I was on this drug and they knew exactly what the side effects could be and were very considerate. I was given an excellent eye exam and told to come back in a year rather than the usual advice of every 2 years to get a check up. I was told that it is very rare for the drug to effect sight and I was advised to do the AMSLER RECORDING CHART eye test on myself at home every 2 weeks as a way of keeping a careful check on my vision. I was given a print out of the test but you can print a copy out and have instructions on what to do

www.garetina.com/amsler-recording-chart

I am really impressed with the care I was given when I disclosed my use of this drug and the thorough eye exam optometrist gave me. It has definately given me peace of mind.

Rebecca, 'no' my hairloss is not as fast as this. Is your derm certain this is FFA and not something else? It is very distressing for you to lose hair at this fast rate. I just wonder if this is a reaction to medication you have been prescribed because some of these meds for hairloss bizarrely can have hairloss as a possible side effect. I am very sorry you are having this experience. XXX

Can anyone recommend the best type of wig for frontal fibrosing alopecia? I need something to cover the sides and top, but have got hair at the back of my head.
Feel pretty depressed about the whole situation! Am getting increasingly self-conscious about windy days and people staring at me!
Also what is the view on eyebrows? Mine have vanished. Is it worth trying a tattoo?

Hi Everyone, Well, I am still really struggling with the latest flare-up of this alopecia. I don't know if it is still going or not. I was put on the topical steroid, Clobetasol, and have been using that for two weeks, but over the last week, I have had a horrible feeling of fatigue (I have absolutely no energy...very unlike me), light-headedness, dry eyes/sort of blurring, some stomach issues and even some minor shortness of breath when exerting myself. Basically, I just feel horrible almost all of the time and just want to lay down and nap (which I can't since I'm trying to work). I just spoke to Dr. Strick in Santa Monica (who prescribed it) and he says no way could it be causing these symptoms. Anyway, I was wondering if anyone on here has had any side effects from topical steroids? Maybe it's depression, but I don't know...

Hi Rebecca. I was prescribed oral steroids for 8 weeks because I was losing my hair at quite some speed.
Last Thursday I was prescribed some medication by the dermatologist and have since found out that it's going to cost me £200 every 6 months. To be honest from what I read on here I wonder if medication does any good at all. We all seem to continue losing our hair, despite pumping our bodies full of drugs. The fact that we have this condition in the first place suggests to me that we all have sensitivities to something. If we then pump strong medications in to our body, I wonder if we are doing more harm than good to a system that is already struggling. Perhaps we are all grasping at straws , because it's better to take medication and live in hope than to give in and see what happens. If we are all going to wear wigs eventually why take the medication anyway? Sorry if I'm being controversial but this is how I feel at the moment.

Yes I am the Pam from the UK and a new member!
In reply to Liz, my dermatologist based in Bristol was reluctant to prescribe oral steroids, as he said the side effects were too great. He gave me a topical steroid cream, Synalar, to use at the front of my scalp around the affected area. I do not really think that it has been very effective though, as the hair is still receding, and the scalp looks shiny.
Any advice from other members welcome as to where to go for a good hair top piece in the UK?
Also, has anyone tried cover up masking products such as couvre, or toppik? What is their feedback?

PamW, yes it is a huge relief to have now been wearing wigs to work for 6 months and for it to be something I have incorporated into my daily regime. I don't wear wigs all the time. I use buffs mostly when I am not working and sometimes a scarf tied round my front hairline like a headband. I do of course want the hairloss to stop because the more hair I have the easier it is to just use buffs etc.. when I can get away with a casual look.

Pam (in the UK) you can get top hair pieces (toppers) from online wig stores int e UK but I would go to a wig salon and try a few on just in case you don't like the way you have to attach them; clips, glue, tape. I depends how much money you want to spend as to what top hair piece you go for. If you friend me on this site I can give you more details. XXX

Welcome Pam - sorry you have this awful FFA too. I can recommend eyebrow tattoos - they make such a difference ! x

In reply to Pam, I use Topik and another called Illusion which are tiny fibers that help to camouflage the thinned out areas of hair. Comes in a few color shades. However, since I wear bangs, I don't sprinkle it on directly at the front but it works for me where you part your hair.

In reply to Pam W., I go to see Dr. Goh this Thursday morning. I hope she will have some ideas for me. These new symptoms of fatigue and light-headedness just sort of crept up in the last 10 days or so. I have changed my diet...started wondering if I was allergic to gluten...so maybe I'm not eating enough, or maybe it is depression, I don't know. I see my therapist this afternoon and yesterday I went and had a bunch of blood work done, but won't have the results for a couple of days (I do see an endocrinologist every year to check for thyroid and other issues, but in the past everything has come back normal). Anyway, the whole thing is pretty stressful, especially trying to come up with enough energy to go go work every day and juggle all these doctor appts.

I am also thinking about buying a front hair piece, just in case this continues to get worse. I went to see a lady last week who makes pieces for people with cancer and alopecia with real hair. She custom makes them. It was a good, but weird experience...one that I never imagined I'd ever have.

I feel so depressing all the time. I have a big trip coming up in a couple of weeks, one I have been looking forward to for many years, and now I can't seem to even get excited about it with all this hair stuff going on.

Anyway, thank you all for listening. Maddy

I find that the best way to cope with this disease is to do three things (in addition to the medications, of course): focus on the blessing in life rather than what this disease is taking away from me, try not to stress too much about the little day to day things that come up and exercise as much as possible. I have found that my hair loss began and increases during times of stress. So I try to take things with a grain of salt and enjoy all that is going on around me. I have to tell you that this is a switch from my normal personality. I am very type A and giving that up has not been easy. And some days I fall back into my old ways. It is my opinion that I actually benefit more from positive thinking than the medications I am taking. However, it is my hope that a combination of both is the best course of action.

I also never give up hope that this disease will stop progressing sooner rather than later. My hairline has changed drastically, but I am still at a point where it is manageable. So, I am doing everything my doctor is telling me to do in terms of medication while continuing to think positively about my situation.

Finally, another gift I give myself is exercise. I think that exercise is the single most thing that causes our body to function better as a whole. Plus it really helps me to live a more stress free life.

I hope this helps others. It has taken me 3 years to get to this point, and it does seem to be working for me as I am back to being in a little remission. My eyebrows have filled in a bit as well in the past few months.

Thank you all for being here too. I don't know anyone else with this disease, and it has helped a bunch knowing you are out there and going through the same thing.

Christie I agree with you, I do keep busy so I'm not dwelling on my hair, I also excercise quite a bit, for 2 reasons really, I'm a cook and I love food so I eat too much,and since I started the menopause 6 years ago it made me feel better so I go at least 3 times a week. I also try not to get too stressed, so I arrange my life quite methodically, which annoys my husband as I'm not good at spontanous, but it keeps me on a level path!
I know I am feeling alot calmer now dealing with my hair loss than i was last year but we have all been through that panic stage of the unknown, how soon will it go, how far back is it going to recede, what am I going to look like, the list is endless. But I found, once I realised it wasn't all going to go quickly, I'm taking everything I can to slow the process and after 18months you still really can't tell I've got a problem, except on windy days,then slowly your life gets back to normaland its not the first thing you think of when you wake up! So hang in there I know its not great but

but your friends and family are the most important to you and they are still there for you.Just think if you had a friend who had ffa would your feelings change for them just because they have less hair! x

Jules, I think the research needs to be in finding out the cause of FFA - once they know the cause we can avoid that and the medical professionals can find a cure. I think the cause is something environmental because FFA did not happen historically so there is something in late 20thC and early 21stC living that is affecting us. Insecticides, hormones fed to cows to increase milk yield, sulphates in shampoos have all been mentioned by medics as possible triggers but I think the research needs to really nail the root cause first. XXX

Debs - I agree. I had an interesting chat with my GP the other day. We both felt though that there may not be just one trigger, that individuals are possibly just prone to having the immune system under attack. I do think that pesticides/household cleaning products/time of life/stress and so on are all factors here. Isolating a single cause I reckon may never happen. Treating the symptoms is all we sufferers now can hope for.
I think that the ideas that have been put forward in recent days, like PMA, exercise, diet and so on may really be the key rather than oral meds. I must say that since taking turmeric - I haven't needed to use dermovate/clobetasol in the mornings, just at night - just in case !!I am seeing Dr H next Thursday - not a trip I look forward to ! Heidi - what you said about FFA and the attitude of friends to this - is totally right in my view - but I can't bring myself to tell anyone yet. Your hair when I saw you looked amazing. I'm going to try the L'Oreal Everstrong shampoo and conditioner - I will get it from Amazon and one of you said it's sulphate free - got to be a good one ! XX

Celia, good luck next week with Dr Harries. I am pleased I am taking the turmeric supplements. I can't tell if they are helping my hair loss but they are very good anti-oxidants so taking turmeric is good for my general well being. I am very pleased that you are able to use the dermovate less. XXXXX

Celia & Debs- I have been taking 1 x 400mg of Tumeric per day, what strength are you using? It does say to take 3 @ day and I'm considering upping my daily amount. One can only hope it helps with the inflammation as it claims.

I am taking 2X400 tumeric.
Someone mentioned last month that she used Tryimeiclone on her
eyebrows and had good luck with them growing back, even though
they were a lighter color. Has anyone else tried Tryimeicione?
I have a prescription for it and am curious who else has tried it.
Thanks, Judy from San Diego

Well, I am back from my appointment with Dr. Goh in Santa Monica and wanted to give everyone an update. First, let me just say that my experience with Dr. Goh was very good. While my diagnosis hasn't changed, she is definitely taking a more aggressive approach to treatment compared to Dr. Strict. She did a round of steroid shots all around my scalp, told me to use the Clobetasol twice a day and put me on Doxycycline (100 mg. twice a day). She sat with me and answered all of my questions, and since she has alopecia herself, can relate to the whole emotional side of this equation. I go back in 8 weeks for another round of shots and to assess the effects of treatment.

I also spoke with her about the possibility of hair transplants with this type of alopecia, and she told me that it was definitely possible. She currently has two patients, both of whom she treated for a couple of years, was able to halt the progression, and who have had hair transplants. The first one, who had her transplants about 6 years ago, had all her hair grow back in but then did have a little "flare-up" about five years later and lost some it, but it is still much better than when she first came in. The second one had it done about 5 years ago, and so far, so good...but, of course, you never know what is to come. Anyway, that at least gave me a little hope that it is a possibility somewhere down the line.

Anyway, it has been a long and emotional day and I am now at work trying to forget about it for awhile. I so appreciate this group and being able to come here and have people who can relate and understand what I am going through. Thank you for all of your encouragement too!

Hi Pam, I don't have any itching and burning. I never have...I don't know why. The Clobetasol is just to try to get the inflammation down. She said Plaquenil is a possible second treatment option, but the Doxy was her first for me...again, not sure why. She did mention a couple of other drugs, including some really strong form of Propecia-like drug...but the FDA has not approved it for women or this particular condition...yet. I was not sure about the name of it. She did mention a couple of other possibilities to try if this course doesn't work....but, again, I didn't get all of the names of the drugs. She did not mention "Actos" by brand name that I recall.

Hey everyone. Sorry I've been AFK, but it's good to be back and see others' postings.

As for me, still wearing a wig full time. I'm pretty much used to it. Looking forward to going through all the posts since the last time I was here. Best to all of you!

MADDY, thanks so much for your post. This is the first time I have heard any doctor categorically say they have managed to stop hairloss in any patients. The fact the Dr Goh is an alopecian herself means she really understands the impact of FFA on us all.

RITA, I take turmeric extra supplements, 2 capsules a day ; turmeric 400mg. I have traweled the internet trying to find the optimium dose for taking turmeric supplements but since doctors don't prescirbe this spice you can't really get a definitive answer. There are other natural anti-inflammatories like ginger, bromelain, black pepper. The supplement I take also includes these. I guess if we take turmeric and some of these others we will cover all bases.

LACE, hello nice to see you back. How is your wig holding out? I am changing my Jon Reanu's about every 4 months but my hairdresser is great she is extending their life by cutting about half an inch off the bottom when the fibre starts to get a bit rough and the wig is good as new so I reckon I can wear one for about 6 months in the future.

Thanks so much Judy and Debs re the Tumeric info. My dermatolgist did not do a biopsy and just told me I have FFA. I wonder why I didn't have this test. Several people mention they have Lichen Planiplaris & Cicatricial & Scarring Alopecia & can not figure out if they are all one and the same even though I've tried to pin this down on the internet. Does anyone know?
Also, I have enlisted the help of a naturpath who is adamant about the effect that a Grain Free (Paleo) diet has on any body inflammation. Even though I am willing to try anything to save my thinning hair, I am having a difficult time staying with it.

Yes, I asked Dr Harries about the effect of gluten and he said there is no evidence that it helps.... that said, if other people are having success with a gluten free diet then we have to listen to our bodies. I have not eliminated anything from my diet, I eat healthily anyway so I will carry on as usual.

I have colored my hair for over 50 yrs. and and wonder if this may have contributed to FFA. I am curious as to whether many of us have done so?? Obviously, it wouldn't be the sole reason but perhaps one of.
Also, has anyone tried acupuncture as it claims stimulation of the blood to the scalp area?

On Nov 27th 2012 CJ - you wrote that you are on Finasteride. Are you still on this ? If so - any good things about it's effect ? Is that what you are now on, Liz ?