Caro - I only used the dermovate lotion for 7 days in the end. Dr Harries did not prescribe it to me, another local dermatologist gave it to me, it was really only to stop any itching/redness if I had any - which I did not!!! Dr Harries did say that he has not found the dermovate to be effective for FFA.

I really don't like the thought of having permenant marks left by these steriod injections, my skin is nice and smooth where the hair has gone, it is not unsightly (although of course I would prefer it to be covered with hair), I wear a wide headband to the gym and for casual times and I intend to just wear a scarf tied up in a bow sometimes in the summer so I really don't want any marks appearing on my head. I think I might just stick to the hydroxychloroquine sulphate and give these injections a miss. I feel after reading your posts that they might cause more harm to my overall appearance than the hair loss.

Hi I have used Thymuskin,Stimulant serum,Actigener(scalp and body treatment,Flagyl,Protopic,Dermovat,Actos,Plaquenil,Metronidazol creme,Regaine forte nothing of this have workd for me.Doxoycycline workd for my forehed it was so swollen.But now the skin on the forehed is so thinn and if I go in the sun I have to use a sunscreen 50+ and wear scarf.I have lost 3,5cm of my hear on my forehed and my skin feel like it is burning on the forehed and the eyebrow.And I also have bald spots on top of my head.I hope my Englis is ok..

Caro, regarding the hydroxycloride and nausea. I also had stomach problems for about 2 weeks. Was eating only rice, chicken noodle soup, etc. But it did go completely away. However, I still always take it after a meal or with food.
I saw my demeratologist today and we both agreed that the hairloss has probably stopped (at least for now) and irritation is gone plus quite a few eyebrow hairs are growing back. Amazing! I've been taking it for about 4 months so it is worth a try.

Hi Rebecca the Doxoycycline workd on my swollen forehed but my hair is still fall off.And Yes it is Wonderful in Iceland.Ok and What is the writer name..And now I'm not on any medication...

Saw my Dermatologist today. She said things looked pretty mild for me today with the FFA and my rosacea. They now have the Excimer laser treatment. I forgot about the article someone posted on this treatment, so I didn't ask her to much about it. They have only had it a month or so I think. Currently it is used on the scalp for inflammatory skin conditions. She wants to try it on my eyebrows since my scalp is not that bad yet. Don't think it has been used on eyebrows yet. Very experimental. It is also very expensive - around $3000 per treatment,not covered by insurance and you have to go twice a week. Needless to say, I can not afford to do that. Plus I'm concerned about the safety of the laser so close to the eyes. You do have to wear goggles. I got steroid injections on my scalp and eyebrows. They are painful on the eyebrows, not to bad on the scalp. I get the indentations on my head, but so far none on the eyebrows. Not sure how long I will continue with the injections. I have been on doxyclycline a month now so to soon to tell if that is helping. I now am to use only the clobetasol foam the night before and night after I dye my hair. I also asked about diet. There is no scientific proof that shows diet helps with inflammatory skin issues. So nothing different recommended there except to try to eat healthy. Sigga - my husband and I were just talking the other day how we want to travel to Iceland. We hear it's a beautiful country. Judy - How do you know your hairloss has stopped? Have you had that happen before and then start up again?

Hi Celia, I have been thinking about eyebrow tattoos for a long time - but am a little nervous about it looking natural - or as natural as can be.
That is encouraging that yours have turned out well. I'm not going to say money isn't a factor - but I am willing to pay the price for a good job - I just have to find one in my area who is very good. How long have you had yours and have you had any touch ups?

Lorn - re eyebrows, Celia and I go to the same lady in Chertsey, Surrey. You get touch-ups approx every 18 months. The cost is £410.00 for people with medical conditions. You have a consultation first. Then go back for your first treatment, then a second treatment a month later. She is excellent, it does not hurt (some other practioners go too deep and it is painful) the healing process is really quick because she only works on the upper layers. I had my brows done by another practitioner before and she was not anywhere near as skilled.

Check out the website www.belindahayle.com and you can see photos of clients.

Judy, delighted that your hair loss has stopped, I have only just started on the hydroxychloquine. Can I ask please; are you using any other drugs?? also you posted a few months ago your Dr advised using probiotics every day, what are you taking ?? as I would like to also be proactive in safeguarding my health now I have an autoimmune condition. Ta xx

Ok Rebecca,Arnaldur and Yrsa they are really good writers.I have to but some more picturs so you can see how my hair has become...

I'm feeling rough. Im not sure if I've caught a bug or if it's the antibiotics or the steriod injections. Anyone else feel rough when they've taken Doxycycline and does it get better?
x

Lorn, that is funny, I just got it in my head your were in the UK too. The hairlike strokes that Simone has just posted are what my lady does too. Very realistic.

I have had very good results using Elidel (pimecrolimus) cream on my eyebrows. After about 6 months of use, they have almost completely grown back. It's quite expensive but the samples I got from my derm lasted a long time. I still use a light pencil/powder to fill the sparse areas but don't bother if I'm just going to the gym or something. I would recommend trying this before resorting to tattoos.

Hi Pam and all,
I feel just like you, Pam. . . one day I think I can manage all this, since activity around the follicles seems less "angry". Then I get relaxed for a bit. . . I just got back from Florida where I didn't think about it at all. Now today I notice my hairline at the top of my forward is red, itchy and more sparse. I was religious about applying the Minoxidil 2X daily for months and the hairloss kept progressing. So I reduced to 1X in the AM before styling my hair. I'm thinner at the top as well and I'm not convinced that it is helping. I keep it up as I'm afraid if I stop outright, then who knows what would happen. So for now I am taking Plaquenil 2X day, with Protopic at the hairline at night and Minoxidil most mornings.

I see less irritation at the temples, but the front hairline is still active. Yuck. . . my part seems OK and I had heard that FFA was just along the leading edges.

I used Nizoral shampoo for a few months as that is recommend for inflammation but I have now switched to a very gentle shampoo that some people on another alopecia support website were using : Faith In Nature, Seaweed shampoo. I got it off Amazon for less that £6.00 It feel nice after I wash my hair and it does not have any paraben or sles and is fragrence/colour free. I am washing my hair less, I used to wash it every day but now a couple of times a week. I dont use any hair dye or styling products at all, just shampoo and leave it to dry naturally. I am of course wearing wigs so I don't need to style my hair. Apart from my front hair line I am not losing hair or having any thinning on any other part of my scalp, although that of course doesn't mean that I wont get that in the future.

Debs you look great in your new picture. You look great in all the styles your trying, and you always have such a big smile on your face. Very encouraging for when that time comes for me. My Derm says to wash your hair every day to keep the follicles from clogging up. Which you don't want to happen with FFA. Shampoos/conditioners can leave residue on the scalp.

Simone, I've been putting a very small amount of Elidel cream over the brow area every night. I started out using it twice a day but didn't like the way it worked with my brow powder/pencil. The only side effect I have noticed is the the skin under my brows is sensitive if I get the water too hot when I wash my face. I first asked my derm about it after reading an article about a woman in Greece whose FFA was successfully treated using Elidel topically on the brows and Avodart orally. I wasn't ready to try Avodart, since it's approved only for men w/ prostate enlargement.

Alice, I asked my derm for Elidel - turns out the very greasy and goopy Protopic she had given me for the scalp is basically the same thing. I'm much happier with the cream, though I have to say, the first few lines of the "possible side effects" info gave me pause. Thanks for the tip. I'm staying on Plaquenil for now. Love the new hair, Debs!

I am having burning pain and bloating in my stomach since I started taking hydroxychloroquine sulphate. Worse after I've eaten. I haven't been given Planquenil, my medication is the generic form (manufactured by Blackrock Pharmaceuticals). Perhaps this is the reason? I suspect I've been given it because it is cheaper than Planquenil. I'm going back to my GP to ask for Planquenil as I read somewhere (can't remember where!) that it is easier to tolerate. Anyone else had the same side effects?

Simone, I put the cream all over the brow area. It spreads easily, so takes just a tiny amount.
A belated St. Pat's wish to all of you: "May the wind be ever at your back." I think this old Irish blessing may have special significance to those of us with FFA. :-)

Caro, last night I took my plaquenil with only about 3 mouthfuls of milk and I didn't get any reactionn, usually I take it with a proper meal (breakfast and then dinner) so I think you are right and your generic version is a bit tough on your tummy.

Hi - sorry I didn't get to answer eariler. My dermatologist is the one who said the hair loss has stopped "for now" but to continue the Hydroxycloride. She will check again in 3 mos.
Sorry to be so vague but I HATE looking at my forehead and avoid
it at all costs. I am wearing long bangs so really don't need to
see the loss. As we all know these things can be temporary so I
am trying to think positive.
Eyebrows - don't know why some are growing (mind you it is only
some - I can count them). My dermatologist suggested adding dabs of Clobasol to the eyebrow area to see if that helps them also.
The Probiotics I get at Whole Foods, the refrigerated ones. I
think any health food store could suggest good ones.
I really don't know how long I have had the FAA but the eyebrows
and body hair loss started at least 3 years ago. I never looked
at the forehead. But that said I can only go by the eyebrows -
this is the first time in 3 years I have seen ANY growth and that has to be the Hydroxycloride. Possibly the probiotics and possibly
a little more sleep and less stress and possibly the DHA Shampoo and conditioner. Who knows? I hate to guess as I am happy to be in remittance. Will see in 3 more months.
So much good info on these posts. I am very proud of you all
that are wearing wigs - they are so attractive but I don't think I could tolerate one on my head. But I love the scarf ideas - I usually wear a hat when wind is blowing or bangs are having a "bad hair" day. Probably a little odd when I am inside but who cares?
Good luck everyone.

Jules, I'm still gluten-free. It's helped my skin on my forehead a lot,but not so sure about the hair-loss. Hard to know, as I am also taking plaquenil and eating better all the way around. Since some daily hair loss is normal, it's always hard to know. Still have doll's hair for sure - nice description - but it's hanging on for now and I can still get away with a comb-over.

Judy thanks for the info on your probiotics, I will see what I can find in my local health food stores. XXX

Debs thanks for the feedback on Planquenil. I saw my GP yesterday and asked him to change my prescription to Planquenil. He said it shouldn't make any difference, but agreed to my request. Started taking it straightaway, and so far I've had none of the burning stomach pain that I had previously. I'm taking 200mgs twice a day.
Went shopping yesterday and because it was so cold I was wearing my fur hat. (not real fur) Felt quite normal! The bad weather does have some benefits!

Sandy, I just checked this link out - fantastic some research is being done - I completed a survey here in the UK just a few weeks ago for Dr Harries in Salford.

I have emailled this survey in the States and told them about our group, I also said we have ladies in UK, Germany, Iceland and Portugal so is it possible for any of us to join in this study, with any luck we can get an opportunity for more of us to contribute data.

Thanks Sandy.

Hello Ladies,

Still trying to come to terms with life lived with FFA. In particular, trying to decide if I want to embark on the treatment path...just can't readily stomach the idea that taking high powered systemic drugs is a good thing. I am planning to see an alopecia specialist soon and hope that will clarify things for me.

Speaking of this specialist I will be seeing, those in the US, west coast, may be interested in participating in the following study by this US physician with national prominence as an expert in studying/treating alopecia. She's published various medical studies and a book on managing this disease. You can look her credentials up on the internet.

Cicatricial Alopecia Research Study

Dr. Paradi Mirmirani is now enrolling patients with cicatricial (scarring) alopecia in a research protocol that is being conducted in collaboration with the Department of Dermatology at Case Western Reserve University. Patients over the age of 18 with active cicatricial alopecia(any variant, treated or untreated) are eligible for enrollment. Participation includes filling out a hair loss questionnaire, scalp photographs, and two scalp biopsies. Scalp biopsies will be evaluated for changes in enzymes of the sebaceous glands (peroxisomes) which may lead to lipid accumulation and then destruction of the hair follicle. There is no compensation for participation in the study.

For patients requesting further information or patients interested in participating in the study please contact Paradi Mirmirani at: Phone: (707) 651-2552 e-mail: Paradi.Mirmirani@kp.org

Link to study info: http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

It is at least heartening to know that there are several research studies happening on FFA. With this group having members in several countries we are well placed to learn of any new developments too.

Thank you for posting the link to the FFA study in NC. I asked my derm for a referral there on Friday, before I knew about the study, and just filled out the participation form online. Will keep you all posted on results.

Brighton Uk :o) xx

You can go under the settings of your profile and add on your location after your name, then save your changes. Then you don't need to type it in each time.