Hi Debs
So glad you had such a good experience with Dr Harris, he really does seem to be thorough and knowledgable, which makes a huge difference from alot of doctors, which in turn gives us confidence! I had contact with him a few moths ago, and he was trying to get founding for a data base for all FFA sufferers, which would be really interesting,did he mention any progress on this? Iam not under Dr Harris, as I am happy with my own dermotologist but I am on the same medication as you, except the steroid injections which at the moment I have said no to as I don't have iritation or itching. Glad it went well!

Rebecca, the problem is that because the condition burns itself out at different places you can't be certain if it is the drug or it would have stopped at that point on it's own... He did not give a figure of what percentage of people it can help because you can't prove it was the drug... I have no irritation or itching either Heidi, the steriod injections are to stop the hair loss, Dr Harries said he has found them to be helpful. He was realistic and did not in any way lead me to think there was a cure but we can try to stop further hair loss. It is just a question of having a go and seeing what happens. I have agreed to be part of a survey that I know Celia is already involved in. It would be extremely useful for medics if they did have a central database for FFA and they could compare the effects of drugs/doses etc..

Thank you, Debs, for taking to the time to report on your visit. I do find it astonishing that there is no one in London who deals with this at all, but I'm glad you found a good doctor who cares and is doing his best to treat women. Of course, there is no evidence that a gluten-free diet will help FFA, but there's also no evidence that it doesn't. There have not been any studies done, nor will there be anytime soon. No one knows much about this condition. My aim is to try to get at what is causing my body to have an autoimmune response and to cut off any other possible autoimmune illnesses. There is plenty of evidence that gluten sensitivity is related to autoimmune conditions.

Thank you so much, Debs, for posting the report of your visit to Dr. Harries. I'd read about him some time ago but had never seen a report from anyone who had actually had an appointment with him. I might ask if my dermatologist would refer me as I could fly down to Manchester from Scotland but I've already lost about 5 cm from my hairline and it is still progressing. I've had FFA for about 10 years so it is a slow moving thing. All I've ever used is Dermovate.

Hi Simone. Nice to hear from you! To answer your questions - no I don't wear a wig though I am now considering some sort of hairpiece - maybe a sort of fringe type thing. I don't know where I would go to get one here in Edinburgh but I intend to have a look online. I've lost almost all my eyebrows now so I use a semi permanent eyebrow pencil. I lost all the hair on my arms and legs first off (at the time I was quite pleased because I thought it'd be great not to have to shave any more!).
As to losing your mind..... maybe it's a bit easier for me because I am not a young woman. If I was in my 30's I'd be truly devastated and I am very sympathetic towards younger women (and men) who have alopecia. I've found that being older makes it easier for me to be philosophical. Also I have a very supportive husband and family and friends too. That helps a lot.
I've lost four good women friends to cancer in the last six years. Each one went through chemo and lost their hair and they had to deal with suffering from cancer too. Seeing that, kind of put things in perspective for me a bit.
I do still get a bit depressed of course! I wear hairbands a lot and hats too (I HATE windy days). I've probably got the biggest collection of hairbands in Scotland......
I guess I cope because I haven't much choice!

Hi Donna and Kath - it's good to hear your thoughts and stories. Donna, yours makes me a bit more optimistic about taking a gluten-free approach. I'm glad you joined the group. Kath, it's always good to read something which puts this whole thing in perspective. I'm so sorry for the loss of your friends.

If you're new to this, Simone, then I really sympathise. It is a shock, I know. But doctors are bound to come up with better and better treatments and I think you seem to be doing all the right things like healthy diet, exercise and lowering stress levels. I'm sure that helps - especially avoiding stress. And apparently FFA can stop at any moment. I can empathise about being scared to start the Planquenil - maybe one of the others in this group could tell you how they've got on with Planquenil.
It is confusing, I agree. All I can say is that I think being in a group like this can help - just knowing that you aren't the only one with this problem is comforting, I've found.

Morning :o) I've decided to buy a wig sometime soon. When I looked last time I was told that they fit more securely on a bald head but I don't want to shave my hair off. Has anyone who has a full head wig and has hair, had any problems with it staying in place? xx

For those of you who, like me, have a lot of scalp tenderness and itching, I think I have stumbled upon something that helps - Oolong Tea. I read about it helping people w/ eczema, so figured it was worth a try. I've been drinking 2 cups a day and my scalp feels decidedly better. Could be coincidence or placebo effect but, whatever it is, I'll take it. My scalp feels better than it has in months. I'm also taking turmeric capsules for inflammation. I'd be interested to see if it helps anyone else.

Liz, I have my own hair (well, minus the bit missing from the front) and my wigs stay on just fine, you don't need to shave your head to wear a wig - in fact you can use small bobby pins a couple at the front and back to anchor the wig in place. Your head is inside it, it isn't sitting on top of your head like a hat does, inside the wig and the back there are 2 straps that you can tighten and if you want to feel extra secure you can buy wig tape for about £5.00 on the internet and just put about 1 inch at the front of the wig to stick it down, it pulls off easily and the wig tape normally stays stuck on your head, you can pull it off or soak it off with rubbing alcohol (£2.00 for a big bottle on Ebay). A wig will not blow off in the wind or fall off if you turn your head upside down in a yoga class... Check out Patti's Pearls videos online, she is a lady that has survived cancer and has a wig salon she does these amazing videos of how to put wear wigs she is full of life and they are really fun and inspiring. If you do decide to get a wig rememeber you don't have to wear it 24/7, I have not worn mine since Friday, I went to gym and Tesco today just wearing a wide headband but having a wig gives you a few more options.

Jules, can you ask Dr Harries:
GRISEOFULVIN - antifungal is being used by Michelle in the USA with MINOCYCLINE ( minocycline is a tetracycline antibiotic like the doxycycline that is being used) what does he think of trying the antifungal?? I was so busy asking about gluten when I saw him last week I forgot to ask about the antifungal drug.

Celia it would be super if you could have a get together, it was great when we had a coffee back in November, I am up for that.
Jules, OMG I am astonished that your FFA stopped for 8 years after taking fucidin - yes, please do ask about that too. There are not many wigs that are designed to be slept in, you can sleep in a wig of course but you will find it does not last very long, there are some wigs that you wear non-stop for several weeks at a time (bonded full lace) they are available from online wig shops for about £200 and there are shops in London that sell them. I suggest you go on the www.wigsupport.com site and look at a recent post about sleeping in wigs.

Simone, if you can find a hair piece that is affordable for you then by all means wear that instead of a full wig, I feel more secure in a wig, that said I have never worn a hair peice so this is just my personal feelings, I would go to a wig shop and try both on, I find that in a full wig I can forget I have it on. This condition means that a full wig isn't necessary to cover up the hair loss but it is whatever you feel most relxed in. Try both and see and weigh up the costs.

When I went to Trendco the hair pieces were far more expensive as they were 'bespoke'. They cost about £700.
Celia I am happy to travel to London :o)
xx

This may sound like a stupid question but here goes: How does one know that FFA has stopped progressing? And for that matter, how does one know if a medication is working? Do the bumps along the hairline ever go away? I can tell if my scalp looks red or feels itchy but can't really tell what my hairline is doing from day to day. So, it's hard to judge what may or may not be helping.

Hi Alice. I dont do it very often because it makes me shudder but every few months I pull on some hair around the hairline (about 30/40 strands). If it falls out without any effort or pain I assume that my condition is still active.
x

Good luck with plaquenil, Rebecca. I'd be interested to know how you get on with it as I have to see my dermatologist next week and if it is now a recognised treatment she might suggest it for me. I'm a terrible coward about taking medication, I'm afraid. I always worry about possible side-effects.

Rebecca, Dr Harries has told me to take 200mg twice a day to begin with, I know there are other ladies taking it twice a day and some just once. Rebecca are you also taking the doxycycline ?? and having steriod injections into scalp?? Liz, you don't know if the meds are making the FFA slow down/stop or if it would have done so anyway if you did nothing. This is one of the many problems with FFA and why it is so hard for derms to treat because getting evidence of meds that works really is tricky.

I've just joined Celia's group. I've also been prescribed Hydroxcloroquine 200mgs but only once a day. Worried that this may not be enough to be effective.

My hairloss have just taken a turn for the worse. I was losing loads, started Doxyclycline in late September for 6 weeks and then stopped. My hairloss slowed down and now has become worse so maybe the Doxycycline helped?! x

Has anyone had contact with the Cicatricial Alopecia Research Foundation and how did they find them? I contacted them regarding setting up a group close to wear I live but they seem very focused on who my doctor is. I've been told that I cant run a group as part of what they do unless a doctor is present which I disagree with x

Hi Liz. I contacted CARF some time ago and I joined them. They send me information by email about when they are having their conferences etc but frankly so far I haven't really found them much use to me as it is all USA based - or seems to be. I didn't know that CARF would want a doctor to be present as part of a group!! That does seem a bit strange to me. I wonder what sort of 'group' they mean?

Hi Caro - I am new to this website as well and live in the US. This is a horrible rare disease to have. I cried for 3 days after I self diagnosed myself compared to 1/2 hour of crying when I found out I needed open heart surgery due to a bacterial infection that blew out my mitral valve. I know - it's crazy - but it gives one an idea of how devestating it is. It's only hair - but somehow it's more than that. It affects our life style as well as our self image (in my opinion) and also makes me wonder how healthy I am. The few people I have told don't quite understand how I feel about this - there is the response that I can always get a wig - which upsets me.
I take plaquenil as well as an antibiotic for the inflammation. I am not sure - but I think it has slowed things down.

Hi all, and welcome Caro. It is a devastating diagnosis and then. . . well. . . a year later, I just feel a bit numb. I have had a range of meds. . . steroids, Finestride, Plaquenil 200 mg once per day and now twice per day. INitially my derm prescribed just once and it didn't seem enough. Coming off of the steroids with just the low dose Plaquenil, I was losing alot of hair this fall. She upped the doseage to 200 mg twice a day and it has slowed things down. I think that Plaquenil is the first go-to defense for the dermatologists and I had been asking about Actos. She did not want to jump to that med without maxing the Plaquenil dosage. I have gotten to where I try not to think about it since it steals my essence. Good luck.

I'm alittle jealous of all the Brit ladies being able to get together. . . anyone in Chicago??

Rebecca, I did ask about the indentation that the steriod injections leave and Dr Harries said they go but it can take several months... is that your experience? or do the dents stay forever? I don't fancy making my scalp look as you have put it 'like a skull'. Liz, I am so sorry your hair loss is bad at the moment, I know you are probably not going to be able to take the hydroxychloroquine but as you say maybe if you restart the doxycycline it was slow it down again. Welcome to the group Caro, we have already been chatting on the alopecia uk website. Glad you have also joined this group. xx

I think tissue atrophy and loss of pigmentation are known side effects of cortisone injections, though not necessarily common. Years ago, I got a cort shot in my elbow for tendonitis. Not long after, I noticed the bone was very prominent and the skin had turned very white. The skin color finally came back but the tissue is still thinner than the other arm. I would imagine that de-pigmentation would not be noticeable on the scalp but tissue atrophy would look like dents. I believe my derm told me that long-term use of Clobetasol can cause the tissue to thin, too.

My indents got better. . . I had injections quite a bit from last November through June. I had a deep one that ran down my forehead. They are all filled in and when I transferred to Dr. Barbosa, she insisted that I stop the Clobetesol as well. the skin at my temples was very thin. I have used Protopic when inflammation pops up. But since taking the Plaquenil, the inflammation at my temples and above my ears has totally disappeared and the most worrisome is that the top of my scalp along the hairline is still showing red around the follicles and is thinning.

I have an indentation which starts at the point where my old hair line was. I've never had injections so maybe for some of us it is the condition itself which causes the indents.
x

Thanks very much ladies for that info, I will treat these injections with caution if I am given them on my next visit.

Hello again everyone and thank you so much Celia for your welcome message and invitation. I would love to come if I can.

Hallo everyone.Hope you are all having a nice day :o)Can I ask about your nails? I read today that alopecia and nail pitting quite often go together, although the article I read refered to alopecia areata. I'd looked up to see what I could find becuase I've had ridges on my nails for years (top to bottom) and in the last 6 months or so they've also been a bit bumpy (I cant thing of a better word) in the other direction. Any one alse have this, or not?
xx

I saw Dr Harries today. Some "good news", or so I thought, was that my hair has already receded 2 cm at the front but because I had a low hairline, it doesn't show too badly. The sides, however, could continue receding, he said. And they've already gone back miles.
He said that the average amount of frontal hairloss was about 4 cm, max 8 cm. He didn't know what % of patients lost the maximum 8 cm. He knew of no correlation between hairloss elswhere on body and how far back head hairloss would go, nor how fast it could progress. It's different for everyone. Regarding Griseofulvin, it wasn't something he would consider prescribing for FFA, but if it worked for someone, he'd be open to using it. I asked about fucidin - he said it probably had no effect on the FFA and the fact that mine seemed to stall after using Fucidin was coincidence.
So, I went armed with a list of questions, but mostly he had to reiterate what we already know - there are no hard and fast rules.
I'm carrying on with Doxy for a further 3 months to give it chance to work.....plus elidel - a weaker steroid cream than dermovate so it doesn't thin the skin. And he thinks that it might have some effect when used alongside antibiotics. I've declined injections for now. Next appt in June.
4 days on paleo diet - no improvement yet!
Liz, I haven't noticed a problem with nails.

Have a good weekend everyone.x

My nails are ok. A few months ago I agreed to participate in a dermatology clinic session at the university medical center and everyone who had a look at me checked my nails. I didn't know why at the time.

My nails are very weak. I keep them very short because they peel and split so badly. I've been taking Biotin supplements and using paint-on nail hardeners, all to no avail.
I've been using Elidel on my eyebrows for months and most of the hair there has grown back. I tried using it along the hairline but haven't noticed any difference there.

Hi Liz, my fingernails are OK. No ridging, though some of my toemails are slightly discoloured and one is thickened but they've been like that for some years. I forgot to mention this to Dr Rajar. I had a look at some images on line which looked a bit like my toenails, though mine are not nearly as bad as some of the photos. I went to my GP to get my prescription for the meds and asked her to look at my toenails. Asked her if it could be Lichen planus? She didn't think so but said she would have clippings tested for ?fungal infection. Alice that's great news that your eyebrows are growing back!